Oral Health Barriers for African American Caregivers of Autistic Children
Abstract
:1. Introduction
2. Materials and Methods
2.1. Recruitment
2.2. Procedures
2.3. Data Analysis
3. Results
3.1. Participants
3.2. Themes
3.2.1. Difficulty in Maintaining Good Oral Health Practices
My mom wasn’t able to go back [to the treatment room] with me one day, and they were trying to do something to my mouth, and I was scared. Instead of them going to get my mom to calm me down, they literally put me in a chokehold and shot me in the mouth with the needle…I’ve been scared ever since.
I guess it’s because I don’t want them to end up like me. Like be so young with cavities and missing teeth. And I know my momma didn’t take us [to the dentist] a lot. So, I want to take them a lot, especially my son, because he [does not] talk. And if he was to have a cavity, I mean if he was to be in pain from a cavity, I wouldn’t know because he doesn’t talk. He’ll just cry.
In the beginning, I think, when it comes to the vacuum suction, she doesn’t like that. So, the dentist lowers it [the suction power]. But if it’s just a loud sound, like the drilling, she doesn’t like it. When she was getting her cavities filled, I think the drilling kind of caused an issue for her, or the noise. And she started to get upset, had a tantrum, started getting aggressive. She started kicking. Her father and my dad actually went to help.
They wanted to strap her in, which I didn’t want them to do. I don’t know. I think I wrapped the blanket around her once, and then when I left the room, they tried to strap her in. It just as so traumatic. It’s like imagine being strapped in and it’s already sensory overload and whatnot…So, maybe we didn’t go for three or four years [after that].
What I try to do, because he tries to be independent, is I let him brush his teeth first. But then when I look at his teeth, and I don’t like how he brushes them, I’m kinda OCD, I’ll grab a toothbrush and start doing it over…Then he gets mad and bites down on the toothbrush, and it’s kind of like I’m battling back and forth with it. It is hard sometimes…But I try to brush his teeth every day.
Basically…when he sees [his siblings] in [the bathroom], he’ll come in, and they’ll sing, ‘Teeth, teeth, you have to brush your teeth.’ And then he’ll say, ‘No, no, no. I don’t want to brush my teeth’. Then they’ll say, ‘Please. Please. Brushing is good for you’. And he’ll say, ‘Yeah, yeah, yeah. I like that. Woo’. Then he’ll let them brush them. But if I say it, he’s like, ‘No’.
When you have a child on the spectrum, it’s overwhelming… I would say depending where you[r] kid is on the spectrum, and how much support you need to give that kid, it may affect what things you have to do for your kid. Like for me, I’m not making any excuses, but my kid needs everything. He needs help in everything that he does. He’s learning. He has challenges every day as far as skills.
…she [the OT] would cut his session down and work ten minutes of teaching him how to brush his teeth. That did help because it was like once he seen that she stepped in to help, then it made it a little bit easier for us to get his teeth brushed because she would keep a toothbrush specifically for my son. Right before his session was over, they would go across the hall, and she would take him in the back and show him how to brush his teeth. It kind of made the situation a little bit better.
So, obviously, initially it was like teaching him how to brush his teeth. So, home-based behavioral therapy helped with that. They helped with all that, and the flossing. And then we also use a fluoride rinse. So, he does that in the morning when he wakes up, and then he does that at night. He flosses usually once a day. He probably should do more than that. But, yeah, I think the dentist wanted him to do more than that.
3.2.2. Challenges with Access to Care and Resources
I don’t want to go. I need to go. That’s honest. And I will go, but I don’t want to go. I don’t want to sit there and it’s like, ‘Okay. Are you going to have to pull teeth?’ Just issues that I have. It’s like, ‘Okay. Well, you’re going to give me this laundry list of things or things that I can’t afford.’… So, you know, that’s just stressful for me, to deal with the reality of the expense—along with, ‘How do we get this done along with everything else?’
I’m always a little skeptical when we go to the dentist for my child. What are they going to find? It’s kind of like when you bring your car in to get a checkup. Okay, they’re going to find a $1200 issue, or a $300 issue? You know what I’m saying?
I truly believe that it depends on your medical insurance coverage. That definitely affects how you’re treated as far as medical or health…But when they find out, for me and my family, we’ve had [state-sponsored insurance] for a while. And you know, [state-sponsored insurance] doesn’t cover a lot of things. And it definitely makes a difference as far as what type of service you get… If you have like [state sponsored insurance], which is the standard or the government insurance, everything has so many limitations on what, you get the bare minimum, you know.
They treat you differently based on whether you can pay or what your insurance is. Yes, you’re treated differently. At this one dentist office, I forgot, that we went to when my kids were younger, they actually had a—he had us enter separately. And I don’t know whether it was considered a bias, per se. But he had his office divided…the people that had [state sponsored insurance] went to this particular section, and then the ones that had the other insurance went to the other section.
There’s not enough of anything. You really have to dig for stuff and find your own resources. If there is a community event or something for kids, you don’t know about it because there’s no advertising. I’m like hours on the internet always searching for things and sometimes you find one thing, you find something else, but definitely not in the community. There’s definitely not enough information for [families of children with autism]. You could have a great program up the corner and not know about it because it’s not—it’s word of mouth or not advertised right or whatnot.
My friend, who lives a block from me, didn’t even know [a specific program] existed, so that’s the kind of thing. It was our place right down the block from me and she didn’t know it existed and it’s like, ‘We pass these things all the time’, and if you’re not aware—if they’re not trying to get things out in the community—there’s a program in the corner and I’m not even sure what they do, but I know that I see kids in there all the time. I’ll see kids of other races and it’s just like, ‘How do you even know about this? I’m the one who lives in the neighborhood’. I’m just like…nobody who lives around here knows about it, so there’s definitely a lack of promotion of resources within the community.
I think the biggest thing for African Americans in the autism community is to find more resources to connect them with services for their kids rather than us having to look so hard to find them on our own. That’s been our biggest experience and why I kind of get frustrated by the fact that I don’t think he is as far along as he could have been only because we never got the right connections to people or the right resources to get it done.
3.2.3. Poor Patient-Provider Relationships
That dentist, he—even though I gave him the information [child’s autism diagnosis], he wasn’t quite receptive to it. He kind of like ignored it, and I kind of ended the session before he even went into her mouth… I guess it was more like the attitude towards it. It was more like, ‘I’ve been doing this for quite a while’. He kind of [gave] that impression like all kids were the same. And I’m like, ‘Yeah. This isn’t going to work out at all. Just because you have that mindset, this isn’t going to work for me. But you know what? Thank you’.
Like I remember going to [an appointment] and I was telling the doctor this happened and that happened… And [the practitioner] is like, ‘Oh, you know all that?’ and I’m thinking to myself, why wouldn’t I?… I was there every day. So, you know what I mean? [Practitioners] think, oh, [parents] don’t know much. And then when I start advocating effectively, not yelling and screaming, but understanding what our rights are because I have educated myself on that and taken advanced level advocacy training, I know how to advocate for my kid.
I think sometimes when people of color go to dentists’ offices, or even doctors’ offices, there is this certain very low expectation in terms of what—you know, maybe the quality of health care [from the health care provider], or the [expected] level of engagement that the parent has with the child.
Just have patience. Autism is a spectrum, which means every child has a different level of tolerance, [and] level of ability. I think they just have to take their time. Then, explain everything. I think, for those [children with ASD] who are not as [verbal], I think a lot is shown in body language and facial expression. I think just embodying—treat them the way you want them to treat your child. Just have patience and explain everything. I think that’s pretty much it.
It was actually like the attitude of him and just the staff…[my child] walked in with her headphones because she does like what she’s comfortable with. And I explained that to him and the staff, and they were just like, ‘Okay, well, when the cleaning starts, she’s going to have to take that off’. I’m like, ‘No. She’s not taking it off. It’s not near her mouth. So, I’m not understanding why she has to take it off’. It was just like they had their own way of doing things. It’s like they had a routine and didn’t want to defer [sic] from it. So, I’m like, Yeah. This isn’t going to work out at all.
Because if you’re like that [indifferent and impatient] or your receptionist is like that [unfriendly], then I’m going to not want to come, or I’m feeling like, ‘Well, how are you going to treat my kid’? I’m just not going to like it. You’re providing a service, and I’m just not comfortable.
4. Discussion
Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Descriptive Characteristics | N = 11 Interviewees (10 Children) |
---|---|
Interviewees | |
Mother | 10 (91%) |
Father | 1 (9%) |
Child gender | |
Female | 2 (20%) |
Male | 8 (80%) |
Child age range (years) | |
4.0–7.11 | 3 (30%) |
8.0–11.11 | 3 (30%) |
12.0–14.11 | 4 (40%) |
US Region | |
West | 2 (20%) |
Midwest | 1 (10%) |
South | 3 (30%) |
Northeast | 4 (40%) |
SRS Severity | |
Mild | 3 (30%) |
Moderate | 2 (20%) |
Severe | 5 (50%) |
Education | |
<High School | |
Some HS/Completed HS | 2 (20%) |
Some college/Associate’s degree | 5 (50%) |
Bachelor’s degree | 2 (20%) |
Graduate/Post Graduate degree | 1 (10%) |
Family Income | |
Less than $20,000 | 3 (30%) |
$20,000–34,999 | 1 (10%) |
$35,000–49,999 | 3 (30%) |
$50,000–74,999 | 1 (10%) |
$75,000–99,999 | 1 (10%) |
Over $100,000 | 1 (10%) |
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Como, D.H.; Floríndez-Cox, L.I.; Stein Duker, L.I.; Cermak, S.A. Oral Health Barriers for African American Caregivers of Autistic Children. Int. J. Environ. Res. Public Health 2022, 19, 17067. https://doi.org/10.3390/ijerph192417067
Como DH, Floríndez-Cox LI, Stein Duker LI, Cermak SA. Oral Health Barriers for African American Caregivers of Autistic Children. International Journal of Environmental Research and Public Health. 2022; 19(24):17067. https://doi.org/10.3390/ijerph192417067
Chicago/Turabian StyleComo, Dominique H., Lucía I. Floríndez-Cox, Leah I. Stein Duker, and Sharon A. Cermak. 2022. "Oral Health Barriers for African American Caregivers of Autistic Children" International Journal of Environmental Research and Public Health 19, no. 24: 17067. https://doi.org/10.3390/ijerph192417067