A Mixed-Methods Study to Examine Dietary Intake of Children With Autism Spectrum Disorder and Parental Perspectives on Nutrition in Florida

Abstract

This study aimed to examine dietary nutrient intake and parental perspectives on nutrition in a diverse sample (e.g., age, ethnicity) of children with autism spectrum disorder (ASD) in the U.S. state of Florida. Forty-one parents of children with ASD (ages 2–17 years) completed a food record, and 25 of these parents participated in semi-structured focus groups. Children with ASD were significantly less likely to meet the recommendation for calcium compared with children in the general population (66.7% vs. 53.1%, odds ratio [OR] = 3.1; p = .002). Riboflavin and vitamin B₁₂ intakes were significantly lower among children with ASD (p < .001). Focus group results indicated parental concerns on children’s diet and mealtime behaviors. Parents discussed the quality of existing nutrition information to be a concern, reported wanting intervention content on effective feeding strategies and healthy eating specific to children with ASD, and wanted to receive a nutrition intervention in multiple delivery formats. These findings will be utilized in developing a nutrition education intervention.

Keywords

autism spectrum disorders young children diet parent feeding

Children with autism spectrum disorder (ASD) have a higher prevalence of problematic mealtime behaviors, with up to 89% reported to have some type of eating problems (Curtin et al., 2015; Ledford & Gast, 2006). Previous qualitative studies reported that parents of children with ASD, especially children who experience food selectivity and problematic mealtime behaviors, described mealtime as stressful and reported little success with attempts to improve mealtime behavior (Marquenie et al., 2011; Suarez et al., 2014). Children with ASD are more likely to develop unhealthy eating patterns (Corvey et al., 2015; Hill et al., 2015) and may prefer foods high in starch and energy-dense foods such as chicken nuggets, hot dogs, cake, French fries, macaroni, pizza, and ice cream (Ahearn et al., 2001; Evans et al., 2012; Schreck & Williams, 2006). They also tend to consume more sweetened beverages and fewer daily servings of fruit and vegetables compared with typically developing children (Evans et al., 2012). These dietary patterns may contribute to developing obesity and other chronic noncommunicable conditions such as dyslipidemia, type 2 diabetes, and cardiovascular diseases in later life (Goldstein & Korczak, 2020; Ptomey et al., 2020; World Health Organization [WHO], 2019).

In terms of nutrient intake, a meta-analysis found that children with ASD had significantly lower intake of calcium and protein (Sharp et al., 2013). Another more recent meta-analysis with 19 studies concluded that in addition to calcium and protein, children with ASD tend to consume less phosphorus, selenium, vitamin D, thiamine, riboflavin, and vitamin B₁₂ and more vitamin E and polyunsaturated fatty acid than typically developing children (Esteban-Figuerola et al., 2018). Nutritional inadequacies or deficits among children with ASD may increase the risk for long-term health consequences such as low bone mineral density (Neumeyer et al., 2013; Sharp et al., 2013).

It is important to address nutritional concerns and mealtime problems in children with ASD (Levin et al., 2014), yet there is an unmet need for nutrition interventions that address both ASD-specific feeding challenges and unbalanced eating habits in this population to prevent future chronic health conditions. Our goal is to develop a nutrition education intervention for children with ASD and their families, and before developing an intervention, it is important to conduct a needs assessment to understand dietary intake and the nature of the feeding difficulties experienced by the target population in specific regions or communities (Marshall et al., 2014). Family meal culture shapes people’s eating behaviors (de Wit et al., 2015), and food selection, preparation, and consumption differ across different regions and cultures (Koenig et al., 2012). In addition, participants of previous studies in the United States have been predominantly White and age below 12 years, representing a lack of information on the dietary intake of older adolescents and diverse ethnic groups of children with ASD.

The purpose of this concurrent mixed-methods study was to assess dietary intake of racially and ethnically diverse children with ASD and examine parent perspectives on nutrition and potential intervention ideas in Florida communities. Objectives were (1) to examine dietary intake of children with ASD with food records and (2) to conduct focus groups to better understand parent perspectives on nutrition and potential intervention options among families of children with ASD in Florida. Dietary intake was compared with general population using the National Health and Nutrition Examination Survey (NHANES) 2013–2014 data (Centers for Disease Control and Prevention [CDC], 2014). A mealtime behavior survey was administered and the results have been reported elsewhere (Gray et al., 2018). Findings from both quantitative and qualitative data were integrated in discussion.

Method

Study Design and Participants

A cross-sectional, mixed-methods study design was conducted using dietary intake assessment and focus groups. Participants were recruited through the Center for Autism and Related Disabilities at the University of South Florida and by contacting local centers, clinics, and schools for children with ASD from July 2017 until March 2018. Participants were eligible if they were parents or caregivers of a child who was younger than 18 years of age and clinically diagnosed with ASD by one or more clinical professional(s) (i.e., neurologist, developmental pediatrician, psychiatrist, clinical psychologist) and were able to speak English. Exclusion criteria included any diagnosis or medical condition requiring special treatment, and taking medication that affects appetite including olanzapine, risperidone, or aripiprazole, or unable to speak English.

Measures

Food Records

A dietary assessment form was distributed to each parent participant. Parents were instructed to select one typical day for the child and record the time of day, whether the feeding was a meal or snack, the name of all food ingredients and beverages with relevant brand names and descriptors (e.g., flavor of juice, color of apple), and portions of each item according to a Food Amount Reporting Booklet (Valencia & Stevens, 2007). Parents were also asked whether the food record date was representative of a typical food intake day for their children, and if it was not, to provide details (e.g., he or she was sick) on why it was an unusual day. Last, parents were asked to help their child accurately recall food they had eaten in school.

Focus Group Questions

Semi-structured focus group questions were developed for the purpose of developing a nutrition education intervention. Questions consisted of topics on current dietary habits and mealtime behavioral concerns; dietary restrictions and special diets such as gluten-free and casein-free (GFCF) diet; current sources of nutrition information; and desirable future nutrition intervention contents and delivery formats. Each category was allocated to take approximately 10 min, including several probing questions for each category.

Data Collection Procedures

The following procedures were carried out and the study protocol was approved by the Institutional Review Board of the University of South Florida.

Food Records

Once parents completed a food record indicating all food and beverages consumed by their children over a 24-hr period, a phone interview was conducted by a registered dietitian or trained research staff to review each food and beverage item together. During the phone interview, the multiple-pass procedure was used to capture any missing food items and amounts by using multiple probes and reminders of food and beverage intakes to enhance the participant’s memory (Pannucci et al., 2018). The food record data were entered into the Nutrition Data System for Research (University of Minnesota, 2018).

Focus Groups

Trained facilitators conducted focus group sessions based on the focus group script via teleconference in a private research office at the University of South Florida. No facilitator was known to the participants prior to undertaking the study. The research procedure, risks/benefits, confidentiality, and other required IRB information to protect human subjects were explained to the participants. Participant informed consent was obtained verbally, and the focus group sessions were audio-recorded. Audio data files were then transcribed verbatim.

Data Analysis

Dietary Intake Data From the Food Records

Energy (kcal); percent of calories from fat, carbohydrate, and protein; and grams of protein, fiber, eicosapentaenoic acid (EPA), and docosahexaenoic acid (DHA) were used for macronutrient intakes. Micronutrient data included vitamin A, vitamin D, vitamin E, vitamin K, vitamin C, thiamin, riboflavin, niacin, vitamin B₆, folate, vitamin B₁₂, calcium, phosphorus, magnesium, iron, zinc, copper, sodium, potassium, and choline. The Estimated Average Requirement (EAR) cut-point method was used to estimate the proportion of individuals in a group with inadequate intake (Institute of Medicine, 2006). The EAR is one parameter of the current Dietary Reference Intakes (DRI) that represents the average daily nutrient intake estimated to meet the requirements of half of the healthy individuals in a group. The EAR values are available for vitamin A, vitamin D, vitamin E, vitamin C, thiamin, riboflavin, niacin, vitamin B₆, folate, vitamin B₁₂, calcium, phosphorus, magnesium, iron, zinc, selenium, and copper (Institute of Medicine, 2006). The data were compared with the ones from a general population using the NHANES 2013–2014. Logistic regressions were used to compare the percentage of children not meeting EAR between our sample and NHANES data controlling for age, gender, ethnicity, and parental education level.

To examine whether mean nutrient intakes were different between children with ASD in our sample and the NHANES data, multiple regression analysis was performed controlling for child’s age, gender, race/ethnicity, and parental education. Sample weights were applied for the NHANES data as recommended in the analytic and reporting guidelines (Chen et al., 2018). The significance level of .05 was applied, and to determine statistical significance adjusting for multiple comparisons, the Holm–Bonferroni correction method was used (Holm, 1979).

Qualitative Data Analysis

A general inductive approach was utilized to analyze the data (Thomas, 2006). Focus group transcripts were coded, and a codebook was created with a priori codes based on focus group questions. Constant comparisons were used throughout the analysis stage, and the codebook was revised to address emergent themes. Each transcript was coded in NVivo qualitative data analysis software (NVivo; Version 12.1, 2018). To test inter-coder reliability, two transcripts were coded by a primary (C.R.) and secondary (A.W.B.) coder. The discrepancies between the coders and coding process were discussed by the two coders and reviewed among the research team until agreeable decisions were made. Inter-coder reliability results showed substantial agreements between two coders (kappa = 0.8 and 99% agreement).

Results

Participant Characteristics

Table 1 describes participants’ demographic characteristics. Overall, children with ASD were 73% male, 39% White, 34% Hispanic, and 17% other race/ethnicity, with a mean age of 8.3 ± 4.0 years. The mean age of parents was 40.3 years, and the majority of the parent participants were mothers (95%) and had associate’s degree or higher (68%).

Table 1.

Demographic Characteristics of Participants in Dietary Intake Study.

Variable	Overall (N = 41)	Focus group (n = 25)
Child demographics
Age (years)^a	8.3 ± 4.02	NA
Gender: Boys	30 (73%)	NA
Race/ethnicity
White	16 (39%)	NA
Hispanic or Latino	14 (34%)	NA
Other	11 (27%)	NA
Parent demographics
Mothers	39 (95%)	22 (88%)
Age (years)^a	40.3 ± 7.7	41.5 ± 8.2
Race/ethnicity
White	20 (49%)	12 (48%)
Hispanic	14 (34%)	6 (24%)
Other	7 (17%)	7 (28%)
Highest level of education
High school diploma or equivalent	1 (2%)	1 (4%)
Some college, no degree	12 (29%)	7 (28%)
Associate’s degree	5 (12%)	3 (12%)
University or 4-year degree	11 (27%)	5 (20%)
Postcollege or graduate degree	12 (29%)	7 (28%)

Note. NA = not applicable.

Mean ± standard deviation.

Dietary Intake

Table 2 shows the percentage of children with ASD and NHANES data not meeting EAR values for available nutrients. Percentage of children not meeting the EAR for calcium was significantly different between children with ASD and NHANES data (66.7% vs. 53.1%, odds ratio [OR] = 3.1; p = .002). In addition, the majority of children in both ASD and NHANES groups did not meet the EAR levels for vitamin D (84.6% vs. 88.4%, respectively) or vitamin E (56.4% vs. 71.9%, respectively), whereas the majority of them met the EAR levels of other nutrients.

Table 2.

Comparison of Children With ASD and NHANES Data on the Percentage of Children Not Meeting Estimated Average Requirements.

Nutrient	Observed percentage not meeting the EAR		Adjusted odds ratio^b	p value^c
Nutrient	Sample with ASD^a	NHANES	Adjusted odds ratio^b	p value^c
Vitamin A (RAE)	30.8	37.6	1.22 (0.61, 2.46)	.573
Vitamin D (μg)	84.6^d	88.4^d	1.37 (0.51, 3.66)	.533
Vitamin E (mg)	56.4^d	71.9^d	0.66 (0.34, 1.28)	.216
Vitamin C (mg)	17.9	38.5	0.51 (0.23, 1.16)	.110
Thiamin (mg)	10.3	15.0	0.92 (0.32, 2.66)	.880
Riboflavin (mg)	10.3	11.2	1.23 (0.44, 3.48)	.692
Niacin (mg)	5.1	12.1	0.46 (0.11, 1.98)	.297
Vitamin B₆ (mg)	10.3	15.7	0.79 (0.28, 2.28)	.667
Folate (DFE)	33.3	36.2	1.45 (0.75, 2.82)	.275
Vitamin B₁₂ (μg)	10.3	15.7	1.55 (0.64, 3.72)	.328
Calcium (mg)	66.7 ^d	53.1 ^d	3.10 (1.49, 6.45)	.002
Phosphorus (mg)	25.6	27.7	1.49 (0.73, 3.03)	.274
Magnesium (mg)	20.5	43.0	0.64 (0.29, 1.41)	.267
Iron (mg)	5.1	13.8	0.53 (0.12, 2.30)	.399
Zinc (mg)	20.5	25.9	1.27 (0.58, 2.76)	.552
Selenium (μg)	2.6	10.8	0.23 (0.03, 1.71)	.152
Copper (mg)	7.7	18.9	0.635 (0.189, 2.134)	.463

Note. Bold text represents significant outcomes. ASD = autism spectrum disorder; NHANES = National Health and Nutrition Examination Survey (CDC, 2014); EAR = Estimated Average Requirements; RAE = retinol activity equivalents; DFE = dietary folate equivalents.

N = 41. ^bNHANES as a reference: Odds ratio (95% confidence intervals) adjusted for age, gender, ethnicity, and education. ^cSignificance levels were evaluated using the Holm–Bonferroni multiple comparison correction method. ^dGreater than 50% not meeting the EAR level.

Table 3 shows that the mean intakes of riboflavin and vitamin B₁₂ were significantly lower in children with ASD after the multiple comparisons were adjusted (p < .001). Fiber and vitamin C intakes were relatively higher, and calcium, phosphorus, and zinc were relatively lower in children with ASD compared with the NHANES data (p < .05).

Table 3.

Dietary Nutrient Intakes of Children With ASD Compared With the NHANES 2013–2014 Data.

Nutrient^a	ASD sample^b	NHANES^c	p value^d
Energy (kcal)	1,685.4 (1,463.4, 1,907.4)	1,814.4 (1,775.6, 1,853.1)	.261
Fat (%kcal)	33.6 (30.8, 36.5)	33.4 (33.0, 33.8)	.866
Carbohydrate (%kcal)	53.2 (49.8, 56.6)	53.1 (52.6, 53.6)	.937
Protein (%kcal)	15.1 (13.5, 16.8)	14.6 (14.4, 14.9)	.574
Protein (g)	61.2 (50.9, 71.5)	66.7 (64.6, 68.9)	.309
Fiber (g)	17.2 (14.4, 20.0)	13.3 (12.9, 13.7)	.008
EPA (g)	0.03 (0.0, 0.06)	0.01 (0.011, 0.014)	.288
DHA (g)	0.07 (0.05, 0.14)	0.03 (0.02, 0.03)	.190
Vitamin A (RAE)	847.0 (562.4, 1,131.5)	595.5 (574.4, 616.6)	.084
Vitamin D (μg)	4.1 (2.4, 5.8)	5.6 (5.3, 5.8)	.103
Vitamin E (mg)	8.4 (6.2, 10.6)	7.2 (6.6, 7.7)	.289
Vitamin K (μg)	88.1 (60.6, 115.6)	70.0 (64.4, 75.6)	.209
Vitamin C (mg)	112.1 (77.4, 146.8)	74.1 (70.8, 77.5)	.033
Thiamin (mg)	1.3 (1.1, 1.5)	1.5 (1.5, 1.6)	.059
Riboflavin (mg)	1.4 (1.2, 1.7)	2.0 (1.9, 2.0)	<.001
Niacin (mg)	19.3 (15.7, 22.9)	21.3 (20.4, 22.1)	.302
Vitamin B₆ (mg)	1.6 (1.3, 1.9)	1.7 (1.7, 1.8)	.312
Folate (DFE)	308.9 (230.7, 387.1)	350.3 (337.8, 362.7)	.307
Vitamin B₁₂ (μg)	3.1 (2.3, 3.9)	4.7 (4.4, 4.9)	<.001
Calcium (mg)	753.7 (557.8, 949.7)	1,008.0 (978.7, 1,037.3)	.012
Phosphorus (mg)	998.7 (839.3, 1,158.0)	1,228.5 (1,196.0, 1,260.9)	.006
Magnesium (mg)	231.0 (199.9, 262.0)	226.7 (220.4, 232.9)	.792
Iron (mg)	11.0 (8.0, 14.0)	13.8 (13.3, 14.3)	.074
Zinc (mg)	7.7 (6.3, 9.1)	9.8 (9.4, 10.2)	.005
Copper (μg)	.9 (.8, 1.0)	.9 (.88, .9)	.612
Sodium (mg)	2,711.6 (2,309.4, 3,113.7)	2,872.1 (2,802.5, 2,941.6)	.440
Potassium (mg)	2,084.3 (1,741.7, 2,426.9)	2,102.6 (2,050.7, 2,154.6)	.917
Choline (mg)	210.2 (169.9, 250.5)	248.5 (240.3, 256.6)	.071

Note. Bold text represents significant outcomes; italic text represents significant outcomes at p < .05 without a multiple comparison correction. ASD = autism spectrum disorder; NHANES = National Health and Nutrition Examination Survey (CDC, 2014); EPA = eicosapentaenoic acid; DHA = docosahexaenoic acid; RAE = retinol activity equivalents; DFE = dietary folate equivalents.

Estimated means (95% confidence intervals) adjusted for age, gender, ethnicity, and education. ^bn = 37. ^cNHANES 2013–2014 data with sample weights applied. ^dSignificance levels were evaluated using the Holm–Bonferroni multiple comparison correction method.

Focus Groups

Thematic codes were organized into themes. There were five overarching themes discussed: (1) dietary concerns, (2) mealtime behaviors, (3) quality of existing nutrition information, (4) desirable nutrition intervention content, and (5) desirable nutrition intervention delivery format.

Dietary Concerns

Many parents talked about dietary concerns regarding inadequate nutrition intakes due to the narrow range of foods consumed by their children. The most frequently mentioned theme that emerged under dietary concerns was food selectivity. Food selectivity included food refusal, limited food repertoire, and single food intake. One mother indicated that “the number one for [child name] is not consuming enough variety of food. So, that’s number one. It stresses me out that he consumes not enough variety of food outside of like, carbohydrates, the mac and cheese.”

Some parents also mentioned that they had tried feeding therapies, avoiding genetically modified organism (GMO) foods, and using supplements as one mother of a 17-year-old son said, “We tried to do organic if we can, none GMO, and no high fructose corn syrup.” Another mother of a 17-year-old daughter said, “They’re just eating one thing, I just go with vitamins and supplements and try to give them the other parts that I’m missing in the diet.” Some parents tried restrictive diets such as the GFCF diet because their children have adverse reactions to foods that contain lactose (milk sugar), gluten (wheat protein), and casein (milk protein). One mother explained that “I noticed every time he eats like any type of dairy except cheese so if he eats yoghurt or milk he has stomach ache.”

Mealtime Behaviors

Another common concern was challenging mealtime behaviors symptomatic of ASD, such as difficulty sitting down during meals. Many parents also explicitly mentioned mealtime behaviors, such as problems getting their children to sit, with restaurants being the setting where problematic behaviors are often exhibited. A mother of a 9-year-old girl noted, “Mostly, we have to work with behavior. That’s our main issue right now, trying to get [child name] to sit at the dinner table . . . And, try to get her sit down is almost near impossible.”

Parents mentioned that functional interventions such as applied behavior analysis (ABA) helped to ameliorate problematic mealtime behaviors and feeding difficulties. One mother of a 4-year-old boy described that “in part of the ABA, we’ve been putting foods for him to not only get used to eating different foods for lunch time but also teach him to eat independently.”

Quality of Existing Nutrition Information

Parents were asked to describe their sources of nutritional information. All participants indicated that they receive most information from doctors, therapists, peer parents, magazines, books, workshops, and various Internet sources, including social media such as Facebook. They also indicated that they look up healthy eating information online and follow general dietary recommendations for typically developing children and what foods are considered healthy in general. Only one person mentioned a dietitian as a source of nutrition information.

Parents also discussed the quality of the information, and many parents stated that nutrition information is helpful but also confusing (e.g., gluten and its effects on autism) and lacking in specific details that they need. Some indicated that information from parent support groups and parenting magazines is particularly helpful, such as new recipes and food products shared by other parents. However, many parents still found much of the nutrition information they access from the aforementioned resources to be too general or confusing. For example, a mother of a 12-year-old girl said that the workshops she attended on nutrition were too general and lacked information that was specifically helpful for her daughter. Several parents noted that messages from different sources sometimes convey contradictory information and that nutrition information is constantly changing and confusing. Some expressed frustration regarding a lack of trustworthy nutrition information, as the following examples illustrate:

It has been confusing because one person or group will say, “Oh, gluten-free is the way.” And the other one will say, ‘Well, I did that, and I didn’t see any change.’ So, it’s contradictory. I did the best I could at first. I stopped giving them juice or anything like that. Too sugary, but at the same time the only thing they want to eat is sugary, full of carbs, crunchy diet. That doesn’t include vegetables and doesn’t include fruits. Not the sugar they like. (Mother of 5- and 7-year-old boys)

I think at one point we had considered and we were doing a modified diet for my son trying to keep him away from gluten and some other products that we have heard that would increase it the—his mannerisms . . . It is somewhat difficult at times to find a good source, credible source of information. I think the real challenge is to separate the sort of those parents’ blogs, the dad blogs, the mom blogs with good old information about a particular child and compare that to good research . . . (Father of a 14-year-old boy)

Desirable Nutrition Intervention Content

When participants were asked what types of nutrition information that they desire more of, three major subthemes emerged: effective feeding strategies, research evidence, and healthy eating. The majority of the parents were interested in learning more about how to effectively improve their child’s food selection and add more food groups to their child’s diet. At the same time, most parents wanted to know more about how to help their children reduce problematic mealtime behaviors such as refusing to accept certain food textures. Some parents wanted to know more about new recipes and meal planning skills, as one mother of a 9-year-old boy described: “Ideas, suggestions, ways to get calcium or green foods in him, whether it’s mixing it in something or a drink or whatever. Quick, simple, easy meals that something he might eat and like.”

A few parents wanted other strategies, including how to read nutrition fact labels, how to deal with sensory issues, how to get access to healthier and nutritious foods, and how to make sustainable dietary changes. Many parents also mentioned that they would like to see more evidence-based dietary guidelines and nutrition information. In addition, some parents were curious about how food and nutrients are associated with behaviors symptomatic of ASD:

I would like to see more research and reports about how does nutrition really affect an individual with special needs, especially autism disorder. I honestly would like to see it more and that it can be done with a more serious approach . . . Because I’ve been reading a lot, educating myself about nutrition now that I’m more concerned about his health because I would like him in the future to be like, he can be more independent. (Mother of a 14-year-old boy)

In particular if there’s any nutrients specifically for ASD kids so that it helps in the behavior, improvement of their behavior. Like oil or something like that. Do those things help or does it matter, do I have to give varieties or things like that. (Mother of 4-year-old girl)

Parents were interested in learning more information about healthy eating for their children with ASD. Specific topics on healthy eating included personalized information geared toward their children, information on supplements, how to read food labels, sample menus, how to make mealtimes fun, and educating the children on how to make healthy decisions themselves through methods such as reading materials and cooking classes for children. For example, a mother of a 12-year-old girl wanted to know “what foods are healthy and what foods are not, and what foods are okay even though they’re not vegetables, fruit, or yogurt basically.” A mother of a 13-year-old boy agreed and wanted to “teach kids about eating healthy and maybe doing something with them, and then preparing little things. Even if it cost a little bit of money, it will be interesting.”

Desirable Nutrition Intervention Delivery Format

There was no dominant answer for desirable nutrition intervention delivery format. Several parents (n = 8) said that they would prefer to get information online or by mobile phone for convenience and feasibility, while some preferred in-person information sharing (n = 7), and some said that either would be fine (n = 10). Further discussion identified specific benefits of each delivery method.

Parents indicated that they do not have additional time to travel to informational meetings and would prefer online articles, webinars, online sessions, or newsletters via email because they are convenient. A few parents specifically mentioned their preference for mobile applications, especially to teach kids about eating healthy and cooking. A mother of a 5-year-old boy said, “I think something online even if it is group-based or not. That would probably be best. Maybe group would be great, because if people have a chance to give feedback, learning from other parents, I mean, that’s a huge tool.” Some preferred a nutrition education mobile application:

An app would be amazing or like it’s—he is like a visual learner. And a lot of times to get him to do things, we will watch videos of—videos of other kids doing it. That’s actually how we get him to eat turkey sandwiches. He’s—we watched a video of it—of these kids like making sandwiches. And then he wanted to make a sandwich because they were making a sandwich. And so, apps and videos, things like that would be amazing or interesting. (Mother of a 5-year-old boy)

As indicated above, there were several parents who preferred in-person lessons, and some parents valued in-person group sessions because they are more likely to attend and would also be able to learn from other parents:

I’m the person where everything is structured. I would like a class, like a college stuff taking notes, I’m thinking of ideas. Although I love online stuff, I just find that I don’t have a lot of time to sit down and read it all. Like a course or a class that I actually made myself sign up for. I think that would get me to go more than just something that’s sent to me. (Mother of a 9-year-old girl)

Parents who preferred in-person sessions also mentioned that having children participate in workshops or classes is an advantage of in-person sessions as one mother described that “I think this is the best thing to do workshop for kids . . . kids prepare the food themselves, they are more willing to try to eat the foods they make with healthy ingredients.”

In summary, parents indicated that they get nutrition information from various sources, some of which are helpful, but noted that much of the nutrition information is confusing or too general (lacking in specificity for their child’s situation). Parents were interested in effective feeding strategies as well as general guidance on healthy eating (i.e., type and quantity of foods to meet their child’s nutritional needs and keep them healthy) and meal planning. Parents also desired more credible evidence-based nutrition information. Regarding intervention delivery methods, some parents preferred online and mobile interventions for nutrition, while there was also comparable interest in in-person sessions for parents and their children.

Discussion

This mixed methods study examined dietary nutrient intakes of a diverse sample of children with ASD in Florida and gathered parental perspectives on nutrition and potential intervention ideas for children with ASD. The dietary nutrient intake analysis identified nutritional inadequacies and the caregiver focus group data explained how dietary challenges such as food selectivity and problematic mealtime behaviors may have contributed to these nutritional inadequacies. Furthermore, parents described their considerable efforts, informed by a wide range of sources, to ensure their children’s adequate nutrient intakes, and indicated that there are unmet needs for more information on effective feeding strategies and evidence-based nutritional guidance. Regarding nutrition intervention delivery methods, some parents preferred remote interventions, but a similar number of parents preferred the in-person intervention format.

The results of dietary nutrient intake analyses indicated that a significantly higher percentage of children with ASD did not meet the recommended level of calcium compared with age-matched children in the general population using the NHANES 2013–2014 data. Odds of not meeting the EAR level for calcium was about three times higher among children with ASD in Florida compared with the NHANES data. This finding is consistent with previous studies reporting lower dietary calcium intake among children with ASD compared with typically developing children (Esteban-Figuerola et al., 2018). The mean intakes of riboflavin and vitamin B₁₂ were significantly lower in children with ASD compared with the NHANES data. Calcium, phosphorus, and zinc intakes were lower and fiber and vitamin C intakes were higher in children with ASD, compared with the NHANES data at a significance level of .05, but the differences became nonsignificant after adjusting for multiple comparisons. This finding is similar to previous studies: recent reviews and meta-analyses indicate that calcium may be inadequately consumed among children with ASD compared with typically developing children, as well as other micronutrients such as phosphorus, riboflavin, and vitamin B₁₂ (Evans et al., 2012; Sharp et al., 2013). Informing parents about potential nutrient inadequacies among children with ASD and ways to improve their child’s eating behaviors through nutrition education may be beneficial.

Reasons for more children with ASD not meeting the recommended levels of micronutrients may vary by individual case but could be partially due to children’s selective eating behaviors (Mari-Bauset et al., 2013; Mulloy et al., 2010). This is somewhat supported by our parent focus group findings as parents indicated that they are concerned about their children’s nutritional status due to selective eating habits and problematic mealtime behaviors. Some parents also indicated that they had tried a special diet such as the GFCF diet that restricts wheat and dairy products. At the same time, parents expressed their interests in learning more about their children’s nutritional needs and healthy eating and indicated that they often rely on health care providers, their peers, or nonprofessional sources such as magazines and social media for nutrition advice. However, they also mentioned a lack of trustworthy nutrition information and confusion regarding nutrition resources along with the desire for access to more evidence-based information.

Our focus group results support the need for more accessible nutrition interventions for all children with ASD, even if their problems do not require an intensive feeding therapy (Sharp et al., 2019). In addition to effective feeding strategies and evidence-based nutrition information, parents in our study were interested in learning more about healthy eating, cooking, and meal planning for their children. Future interventions may incorporate nutrition education with these components to guide parents to increase their confidence in preparing healthy meals and snacks for their children, becoming a role model in healthy eating, and making the home food environment healthier for their children as well as for themselves. In the long term, these approaches may help children develop and maintain healthy eating habits (Bandini et al., 2017).

Regarding intervention delivery methods, some parents expressed a preference for online or mobile-app interventions due to their limited ability to participate in in-person activities, whereas other parents equally preferred interacting with peer parents through in-person group settings. Previous health promotion studies support that group-based eHealth interventions may offer flexible delivery and social support simultaneously (Ahrendt et al., 2014; Deka et al., 2019; Joiner et al., 2017; Wakefield et al., 2016). In addition, as video modeling has been frequently used to teach daily living skills to children with ASD (Gardner & Wolfe, 2013), incorporating video modeling into a mobile-app intervention and teaching parents how to use it as an easy strategy to encourage children to eat an expanded array of food options may be warranted. Diverse types of nutrition interventions are warranted to satisfy all individual needs.

Limitations of this study include the fact that parents who agreed to participate might have been more interested in nutrition and healthy eating compared with those who did not participate; nothing is known about the parents who did not contact the research team. In addition, while our focus was not on generalization, all parents in this study were from Florida, and dietary nutrient intakes and parental perspectives in other states in the United States or other countries may differ from our findings. Nevertheless, these results contribute to the existing body of knowledge by providing nutritional status of a diverse sample of children with ASD, especially with a higher percentage of Hispanic participants, and yield important insights from parents on nutrition and their perspectives on future nutrition interventions for their children with ASD.

To ensure adequate intake of potentially low nutrients such as calcium in children with ASD, dietary intake should be carefully monitored and parents may consult with health professionals on nutrition and healthy diets. Common dietary challenges should be addressed as potential contributing factors for inadequate nutrient intake. Given the fact that many parents of children with ASD are exposed to misinformation that is not supported by scientific research, evidence-based nutrition education for children with ASD and their parents is warranted.

One of the challenges of providing parents with evidence-based nutrition information might be the lack of nutrition professionals who are properly trained to work with populations with ASD. The Academy of Nutrition and Dietetics’ Pediatric Nutritional Care Manual includes feeding guidelines for children with ASD, yet parents in our study rarely mentioned a registered dietitian/nutritionist as a source of nutrition information. It has been reported that access to nutrition services is often limited within early intervention programs (Whittington & Edwards-Hare, 2005) and most likely within other special education services. Further research is warranted to examine whether nutrition services are well utilized by these programs and to develop innovative interventions that can effectively influence eating behaviors of children with ASD. Additional professional training may be beneficial to make nutrition education interventions and services more broadly accessible to those who need them.

Last, there is a lack of information on how dietary intake or habits may affect children’s cognitive and behavioral functioning. Breakfast consumption and children’s academic performance have been positively associated (Rampersaud et al., 2005), and a school-based study that examined diet quality and academic performance found that dietary adequacy and variety were identified as specific aspects of diet quality important to academic performance among children (Florence et al., 2008). Increased diet quality and nutritional adequacy through nutrition education interventions may help cognitive and behavioral development of children with ASD. One study that examined the association between diet quality in early childhood and autistic-like traits in young adults found that lower food variety and diet quality in early childhood were significantly associated with autistic-like traits in young adults (Panossian et al., 2021). Further studies are warranted to explore potential impacts of diet quality on cognitive and behavioral functioning in children with ASD and how to further integrate nutrition education into special education services.

Footnotes

Acknowledgements

We thank all organizations that helped us in recruiting participants. We would also like to thank all the parents who participated in this research and a research assistant, Bianca Anuforo, who contributed to data collection.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

This work was supported by the University of South Florida Research and Innovation Internal Awards Program No. 0128126.

ORCID iDs

Heewon L. Gray

Acadia W. Buro

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