“What’s In It?” and Twenty More Everyday Questions Autism Parents Should Ask

“The important thing is not to stop questioning. Curiosity has its own reason for existing.”

~Albert Einstein

But I admit to bewilderment and frustration when some in the larger world decline the Covid vaccine because they “don’t know what’s in it.” Blunt Talk warning here, but anyone with the awareness to resist something because they don’t know what’s in it—a legitimate concern—also has the ability to keep talking and ask, “What’s in it?” Indeed, it’s a parent’s and concerned citizen’s responsibility to ask a wide enough circle of knowledgeable and experienced people until they get an answer full enough to make an informed decision. The failure to ask that question has the potential to be a truly fatal lack of curiosity. And long before and after Covid, it pertains to every medication, food product, or supplement we’ve ever put into our bodies and our children’s bodies.

Our own pediatrician encouraged us to ask “What’s in it?” about everything from medications to foods to household products. As a family with children on the spectrum, “What’s in it?” was a constant refrain in our household, from both the adults and the children. With those three little words, we learned to avoid various food additives, unsafe or offensive household products, and other substances that negatively impacted physical or mental health, and to direct ourselves to better choices. Long before the Covid vaccine became available to our family, I asked every doctor with whom we came in contact, “What’s in it? How does it work? What are the possible downsides? Are you comfortable with it?” Our circle of docs included primary care physicians, emergency room doctors, surgeons, dentists, gastroenterologists. When I got almost identical answers from a wide range of unrelated medical professionals, I felt confident I had a good answer, with the understanding that nothing in medicine can be 100%.

If you’re not in the habit of asking “What’s in it?” about the medications and treatments prescribed for your child, the following checklist, adapted from 1001 Great Ideas for Teaching and Raising Children with Autism and Asperger’s, will get you started. My co-author Veronica Zysk and I developed this list on the advice of a doctor who advised that parents should never dispense medication to a child without complete information. “Some physicians may not disclose all the information they should without your prompting,” we wrote, “and some prescribe medications ‘off label,’ meaning they have been tested with adults but not with children, or have been shown to be effective in treating a similar, but not the same, condition. Only by asking questions can you better understand the possible benefits and side effects of recommended medications, and thereby make an informed decision as to whether you wish to pursue the treatment.”

1. What is the name of the medication? Is it known by other names? Is a generic equivalent available?
2. Where can we read objective evaluations of the medication written by sources other than the manufacturer?
3. Are there other medications for this condition? Why do you recommend this one over the others?
4. Has this medication been tested with children?
5. What do researchers know about the medication’s effectiveness in patients with autism or Asperger’s?
6. In what way do you expect the medication to help my particular child (not just children in general)?
7. How do body systems absorb and eliminate the medication?
8. What are the common side effects? What are the less common and/or possible serious side effects?
9. Are laboratory or other tests needed before taking the medication? Will any tests be required while using the medication? Where will the tests be administered?
10. What do we do if a problem develops? For example, what if my child becomes ill, misses doses, or we see signs of side effects?
11. Under what conditions should we immediately stop its use? Is it dangerous to stop use immediately, that is, does discontinuing require tapering, and are there withdrawal side effects?
12. How long does it take before we see improvement?
13. Is this medication addictive? Can the child abuse it?
14.  Will a physician monitor my child’s response to the medication, making dosage changes if necessary? Who will assess my child’s progress and how often?
15. How long will my child need the medication? What factors will lead to a decision to stop this medication?
16. Should my child avoid any other medications or foods while taking the medication? Should he take the medication on an empty or full stomach?
17. Should my child stop participating in any particular activity or stop eating particular foods while taking the medication?
18. What are the known interactions with other drugs, supplements, and food?
19. What is the cost of the medication (and its generic, if available)? Does my health insurance cover it? Is financial assistance available?
20. Do we need to tell the school staff about this medication?

We generally think of “What’s in it for me?” as a selfish question, but in this case, it’s smart and caring. As my children also liked to remind me, no less an authority than Mr. Rogers taught us, “It’s good to be curious about many things.”

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Adapted from 1001 Great Ideas for Teaching and Raising Children with Autism and Asperger’s by Ellen Notbohm and Veronica Zysk, 2^nd edition (2010, Future Horizons), and “Medications and Informed Consent” by Luke Tsai MD, Autism Asperger’s Digest, January-February 2002.

Originally published in Ellen Notbohm’s newsletter, The Next Thing You Know. Subscribe here to have fresh content, sharable memes, children’s book reviews, and notices of Ellen’s new works delivered to your mailbox.

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