Grandparents Can Participate in Autism Research

Autism research studies are being conducted constantly by reputable organizations, and they continually seek volunteers and they often pay the participants. And many of the studies are conducted remotely (questionnaires, communications, etc.) and do not require in-person involvement. If grandparents are caregivers or guardians of grandchildren with autism, they can often qualify for research participation.

On its website the Autism Society of Central Virginia (ascv.org) lists a variety of current research studies that are taking place nationwide. Simply go to the website and search “research studies.”

I looked at the list on April 28, 2022, and it contained 28 research studies that were looking for participants. The ASCV groups the studies into five categories: infants, children, adolescents, adults, and gender diverse individuals.

Within the Infants category, for example, is Drexel University’s study of communication tools used by infants with autism. They pay the participants.

The Children category includes a study of significant sleep disorders in 3 to 7-year old children with autism, a study of the impact of COVID-19, a study of auditory hypersensitivity, and others.

Examples in the Adolescents category include a study on sex education and one on transition planning (to adulthood).

The Adults category includes studies on employment experiences, physical activity habits, experiencing pain, and others.

There are three fundamental ways that we autism grandparents and our grandchildren and our grandchildren’s parents can benefit from participating in research studies. First, we are likely to gain information and strategies that can be helpful to our grandchildren. Second, we will form potentially beneficial relationships with autism experts. And third, we will feel good about helping to elevate the overall understanding of autism.

As I said, many, if not most, of these research studies welcome the participant of “caregivers” as well as parents. Often autism parents are so consumed by daily challenges that they don’t have time for such participation. But often we grandparents do!

Internet Discovery by an Autism Grandparent

Here’s the link: https://ascv.org/aam/

We autism grandparents usually have more time to do Internet research than do our grandchildren’s parents. That’s one way we can be of service to them: find good stuff and share it with them.

I recently found a wonderful resource on the website of the Autism Society of Central Virginia. The resource is a 7-item list.

1. Autism Fact Sheet for Younger Children

This fact sheet has 8 items such as this: “Some people with autism talk, and others do not. Just because someone doesn’t talk out loud doesn’t mean they don’t have things to say or share.

2. Autism Fact Sheet for Teenagers

This 11-item list includes this: “Things like bright lights and noises bother some kids with autism because their bodies and brains are more sensitive to processing sensory information.

3. Autism Cards and Quotes

These are cards that you can place in classrooms, offices, car windshields, etc. to raise awareness of autism. They include Dr. Stephen Shore’s “If you’ve met one person with autism, you’ve met one person with autism.”

4. Book List: Preschool/Elementary

There are 23 books on this list, including What I Like About Me by Allia Zobel Nolan.

5. Book List: Middle and High School

This 21-book list includes Buster and the Amazing Daisy by Nancy Ogaz

6. Book List: Adults

This wonderful 12-book list, some of which I’ve read, includes Uniquely Human by Barry Prizant.

7. TV and Film List

This 12-title list, some of which I’ve seen, includes the movie “Life, Animated,” and television show, “Life on the Spectrum.”

I’m already sharing some of this with my granddaughter’s parents, and they are appreciative indeed!

What Grandparents Need to Know About Special Diets for Autism

Children on the autism spectrum are at risk for all sorts of gastrointestinal and nutritional challenges: gastroesophageal reflux disease (GERD), chronic diarrhea or constipation, food regurgitation, food allergies and intolerances, feeding problems, etc. My six-year-old granddaughter, for example, had to get all of her food through a g-tube for her first three years, and after that it was a continual struggle, even with the help of therapists, to get her to eat. Today, thank goodness, her feeding problems are mostly over.

The fact is that it is common for autistic children to have challenges with nutrition. Of course it’s usually their parents who make the rules and strategies regarding food. And we grandparents are expected to follow suit when our grandchildren are in our care.

But grandparents can be helpful in a very meaningful way: we can do research regarding our grandchildren’s challenges and, if welcomed, we can share what we learn with our grandchildren’s parents. “It’s great that you now have Angelina on this special diet that’s going to be helpful for GERD,” I might say to Angelina’s parents. “If you like, I can do research to see if there are additional strategies that are recommended by some of the big medical centers.” Then I might explore the websites of institutions such as Johns Hopkins, Duke, and/or Cleveland Clinic. I’ve learned that all you have to do is Google the name of a medical facility followed by the words “autism center” and you’ll usually arrive at their expertise regarding autism.

Our grandchildren’s parents are usually so busy with daily challenges that they seldom have time for this sort of research. Their information often comes from word of mouth from other parents or from testimonials on Facebook or ads on the Internet.

The GFCF diet (gluten-free/casein-free – no wheat, barley, rye, milk or dairy) is currently being embraced by a lot of autism parents as something that is scientifically proven to be productive for autism, to lessen problem behaviors, to enhance speech development, to even “cure” autism. The Ketogenic diet (high fat, low carbs) is another diet that autism parents are embracing; they say it relieves seizure disorders. There’s the Yeast-free diet (eliminate yeast and sugars), the Feingold diet (eliminates additives and chemicals), and a variety of custom-concocted diets that claim to do positive things for children with autism. Each of these special diets is accompanied by heartfelt praise by parents who have seen its success in their own children. The same is true for all sorts of dietary supplements.

Sadly, in spite of claims to the contrary, no diet has yet been scientifically proven to be an effective treatment for autism’s symptoms. You can find them discussed on the websites of the nation’s leading medical centers, and you’ll see the results of research. The GRCF diet, for example, does have scientific merit to its reasoning, but its effectiveness is not supported by medical research. Hopefully a beneficial autism-specific diet will one day be discovered and proven, but thus far it doesn’t exist.

Every special diet – whether for autism or not – is accompanied by challenges. The GFCF diet, for example, comes with a need to make up for lost fiber, nutrients, calcium and Vitamin D – all of which are vital for healthy growth and development. The Keto diet leads to poor growth, poor weight gain, and increased cholesterol. Dietary supplements – vitamins, minerals, probiotics, etc. – come with the risk of taking too much and/or significant contraindications with other supplements and medicines.

Many parents are not aware that dietary supplements receive very little oversight by the Food and Drug Administration. For example, the FDA does NOT review them for safety and effectiveness. The manufacturers oversee themselves. The FDA gets involved only after there are significant complaints. Thus the information we receive regarding a specific bottle of Vitamin C or Calcium pills is provided totally by the manufacturer and without review or confirmation by the FDA or by any other public regulatory agency.

Every person with autism is different, and each person’s diet and therapy needs should be tailored to that person’s specific medical challenges. For example, constipation requires one type of diet, diarrhea another. Someone just now learning to swallow requires one type of diet, someone who overeats requires another.

Dieticians and nutritionists agree on one fundamental thing: diets that are less processed are best. They are not only easier to digest and absorb, but they also contain fewer toxins.

We autism grandparents are often aware of the specific dietary challenges of our own grandchildren, and we can be helpful not only go doing research, but also by knowing that our own grandchildren’s dietary needs are unique.