DISCUSSION

• This first challenge relates to provider knowledge and receptiveness to parents’ concerns. Par-ents reported their child’s doctors typically responded that they were worried for no reason and that it was not uncommon for children to have delayed speech or other developmental mile-stones. These issues suggest a need for continuing education in the diagnosis of ASD as well as a thorough review of the different symptoms and behaviors that may indicate an ASD diagnosis.

• The second challenge of parent education and awareness relates more to parents’ access to information about autism. For most parents, when their child received an ASD diagnosis, they knew little about the disease and had limited support from family. Providers and advocates should consider developing more individualized educational information that provides an overview of ASD, where their child currently sits on the spectrum, and basic information on services that may be effective.

• One challenge with this system is that each regional center, as a private corporation, may offer services as they deem appropriate. This likely contributes to the perception that some regional centers offer better and more services than others. Those regional centers that serve families with more “flexible resources” tend to be the ones perceived to offer better services. Given the disparities in services that parents reported across Los Angeles County, a review of this policy and the implications that it may have with regards to disparities in access to care should be made.

Addressing the issue of disparities in ASD diagnoses cannot be effective alone. Interventions to minimize these disparities will require team building and community partnership to ensure that community providers, advocates and parents are integrated into these efforts. Using a CHW/pro-motora model is one way to ensure that this occurs, as this requires training and education from various facets of the community. Future research should develop and evaluate such an interven-tion to assess whether it has a significant impact on access to care among minority populations.

REFERENCES

Accessing Services after DiagnosesWhile some parents felt that the challenges they faced receiving services would be ameliorated after receiving their child’s ASD diagnosis, they reported that they soon found that was not the case. When working with service coordinators and schools, they found there was a need to be knowledgeable about available services and advocate for their child.

One parent reported calling her area’s regional center to request specific services for her child and was told they were “unable to provide them due to funding. Nobody was knocking at my door telling me what I needed to do. I had to learn from talking to other parents”. This was a common story, with parents reporting that a list of available services was never actually provided to them.

AdvocacyGiven these challenges, respondents felt that one of the most important things a parent needed to learn when seeking services for their child was advocacy.

• Parents felt this was needed in order to get a diagnosis, and continued as their service needs changed and children entered school and needed to complete an individualized educational pro-gram (IEP) on a regular basis.

• In addition to advocating for their child, legal representation was often cited as a necessity. Some parents reported that once you request legal representation at a school’s IEP meeting, suddenly all of the school staff who should be involved are there “there were about 22 people there, nor-mally you have about 4 or five”.

I have come to find that dealing with the regional center, unless you know how to navigate the sys-tem, or unless you know the proper term, or unless you’re a lawyer, or certain color, or if you’re with a certain regional center [in other parts of town], you don’t get the services that your child needs

InequalitiesRespondents also shared that they feel inequalities- both racial/ethnic and economic - do exist when it comes to being able to access services for their child.

• Parents reported that the regional centers in the areas that include a large proportion of minori-ties or lower income communities have a reputation for providing less services to their clients. Respondents reported meeting parents who live in other communities in the Los Angeles area at conferences or workshops who “brag about all the services they are receiving through their regional center and it makes me question why those services are made available to her”.

• They reported that some parents would use the zip code of a family member or friend who lived in another area of town in order to access the regional centers with a better reputation.

I understand that a lot of parents don’t want to file a complaint but I feel that a closed mouth won’t get fed. I know of other parents who are using other people’s zip codes just not to use cer-tain regional centers because they know of another regional center that provides more services.

• In addition to geographic inequalities, some parents also perceived that there are some racial and ethnic inequalities related to access to services. One respondent reported that her service coor-dinator warned her that there are some “color boundaries” when it comes to accessing services and she would have to advocate for the services she wanted her son to receive.

• Several parents also perceived some racial/ethnic stereotypes could be attributed to misdiagnos-es or late diagnoses of ASD among Latinos and African American. As one parent explained:

They [minority children] don’t get diagnosed early because of the status quo the community has placed on them…that it is typical, especially for male young boys, to be overly aggressive. And that is why they aren’t taking them seriously.

• In addition to the misperceptions of how minority children may behave, one Latino parent also expressed that Latino parents are often looked down upon by doctors and other providers, once again resulting in their concerns for their child being ignored. This belief has contributed to the general perception that there are more services available for Caucasian children than other racial or ethnic groups.

There is ‘American autism’ and there is ‘Latino autism’. They hear about an American child with autism and all of these maternal and paternal instincts come out, that the child is so intel-ligent and needs help. And for the Latino child, they say he is throwing tantrums, spoiled and the parents don’t know how to educate him.

Navigating the System Parents clearly articulated that navigating the system of services for their autistic child was a chal-lenge. Focus group participants were asked whether a patient navigator or community health worker (CHW) type model might be helpful in addressing these barriers. The idea of having an autism navigator or CHW was well received by participants.

• Parents expressed that these individuals could be integral to helping the parent advocate for an assessment of their child, understanding the diagnosis and receiving the necessary services.

• They felt that such a person would be invaluable for providing resources such as referrals for assessments and free or low-cost legal assistance: “They can be the connection between giving parents the diagnosis and the parent receiving the necessary services”.

• One African American parent reported that such a person should “speak our language” – mean-ing that they need to know how to approach and interact with the community in a meaningful way

“You are the voice of your child, if you don’t speak up, no one will hear your son”: Latino and African American parents’ perceptions on access to care for children with autismKatrina Kubicek, Marisela Robles, Kathryn Smith, Leslie Richards and Michele D. Kipke

BACKGROUND:

In spite of investment in and prominent attention paid to racial and ethnic health care disparities, there still exist enormous disparities in the United States across multiple domains including access to care and use of services, prevention and population health, chronic diseases, health status and quality of care.1,2

• Autism spectrum disorders (ASD) are one of these domains where disparities in access to care and diagnosis continue to exist.3

• ASDs are a growing concern in the United States, as recent reports have high-lighted the increase in prevalence of ASD nationally, with the Centers for Disease Control and Prevention (CDC) reporting that one in every 88 children has an ASD, finding variability in the prevalence estimates of ASD based on race or ethnicity.3

• This increase in prevalence has mobilized advocates, families, public health re-searchers and policymakers to implement policies and programs that facilitate assessment, treatment and support for children with ASD and their families. This is important as research indicates that early diagnosis and treatment are critical for improved health outcomes for children with ASDs.4-6

• While there is no evidence to suggest that the odds of an ASD diagnosis is dependent upon family characteristics such as race/ethnicity, income or edu-cation7, research examining the diagnosis of autism have found disparities in diagnosis and access to care among Latino and African American children.3,8-10

• While the recent CDC surveillance data found an increase in the diagnosis of ASD in African American and Latino children, disparities still remain in the diag-nosis of ASD among Black and Latino children compared to non-Latino White children.

METHODS:

A mixed methods approach was taken in order to provide more in-depth discussion and context of parents’ experience, while also providing the opportunity the objectively describe parents’ ac-cess to services. A total of 10 focus groups were convened between May and August 2013 with 56 total participants (43 Latino/Hispanic and 13 Black/African American). Participants also com-pleted a survey to gather demographic information and assess parent’s knowledge of and access to autism support services.

Focus group discussions revolved around: • The process parents go through to receive their child’s first diagnosis for ASD • How do parents of children with ASD access services for their child• How parents describe/characterize their experiences in accessing services for their children.

In order to qualify, potential participants needed to: • Be a parent or primary caregiver of a child with an autism diagnosis• Identify as either Latino/Hispanic or Black/African American• Speak English or Spanish

ANALYSIS

The qualitative analysis utilized a ‘‘constant comparative’’ approach, an aspect of grounded theory that entails the simultaneous process of data collection, analysis and description. In this process, data are analyzed for patterns and themes to discover the most salient categories, as well as any emergent theoretical implications.11,12 As the data are collected, they are immediately analyzed for patterns and themes, with a primary objective of discovering theory implicit in the data. To expe-dite this process, a written summary of each focus group discussion was completed immediately after each group. Research team members reviewed these summaries and subsequent tran-scripts to assess whether theoretical saturation had been reached.

RESULTS

Parent Demographic Survey (N=56)N (%)/Mean (SD)

Gender

Male 4 (7)

Female 52 (93)

Age

18 – 25 1 (2)

26 – 35 12 (22)

36 – 45 26 (46)

46 – 55 15 (27)

55 or older 2 (4)

Ethnicity

Black / African American 12 (21)

Latino / Hispanic 45 (80)

American Indian 1 (2)

Other 1 (2)

Household income

Less than $20,000 25 (45)

$20,000 to $29,000 10 (18)

$30,000 to $39,000 9 (16)

$40,000 to $49,000 5 (9)

$50,000 to $74,000 4 (7)

$75,000 + 3 (6)

Highest level of education

Less than high school 12 (21)

High school graduate/GED 16 (29)

Some college 15 (27)

Bachelor’s degree 8 (14)

Graduate school 5 (9)

Marital status

Single 17 (30)

Married 30 (54)

Divorced 5 (9)

Living with partner 4 (7)

Spanish preferred language 31 (56)

Have health insurance for self 37 (66

Has not received any information on autism from doctor

32 (57)

Parents’ Knowledge of and Access to Autism Support Services (N=56)

ServiceHeard of it

N (%)

Would help my child*

N (%)Accessed it

N (%)

Speech Therapy 56 (100) 54 (96) 50 (89)

Occupational Therapy 52 (93) 46 (82) 43 (77)

Physical Therapy 31 (55) 21 (38) 11 (20)

Applied Behavioral Analysis 45 (80) 40 (72) 34 (61)

Floortime 38 (68) 34 (61) 26 (46)

Social Skills Training 45 (80) 43 (77) 31 (55)

Behavioral Management 42 (75) 36 (64) 30 (54)

Help with Individual Education Program (IEP) 51 (91) 51 (91) 47 (84)

Help with Regional Center 38 (68) 37 (66) 36 (64)

Family Therapy 28 (50) 27 (48) 16 (29)

Nutritional Counseling 34 (61) 30 (54) 23 (41)

Medical Specialists (e.g., neurologist) 30 (54) 27(48) 21(38)

* Those who indicated it would help “a lot” or “a little” on a 5-point scale

Process of Receiving Diagnosis Most parents in the study expressed knowing there was something wrong or different about their child relatively early on, around the age of one or two. Symptoms parents noticed included: lining up toys, infants or toddlers tilting their heads repeatedly, being very picky eaters, crying uncontrol-lably, rocking, spinning, not walking at the age of two or three, loss of speech, and other behavior-al issues. Although, the majority of parents did not know much about autism, they felt concerned enough to turn to their child’s doctor for answers.

• Many of the families involved in this study receive services at a community clinic where they generally do not see a pediatrician for their child’s care but rather a family doctor or someone in general practice.

• They would go to this provider with their concerns and were told not to worry, that “a lot of kids don’t start talking until they are five.”

• This led to parents feeling not heard or believed by their child’s doctor. Even after countless doc-tor visits where they continued to express concerns, parents were still told, “it’s normal”, “every-thing is fine” and “don’t worry”.

• While this reaction from their doctor was frustrating, most parents simply accepted what they were told by their providers, although they continued to have concerns about their child’s devel-opment.

• Other parents reported changing doctors multiple times in an attempt to find a provider who would take their concerns seriously. One mother explained that in Latino cultures, doctors are highly respected and “know it all, so if he says there is nothing wrong, then there is nothing wrong” – so it is difficult to challenge their advice or diagnosis.

Characterization of the ASD diagnosis experience and access to services To better understand the disparities in ASD diagnoses, it is important to consider the context in which parents must navigate when seeking care for their child. In general, parents reported a number of challenges in working with providers.

Cultural BarriersSome of these challenges were related to cultural beliefs such as reticence to question a doctor’s opinions.

• An additional cultural barrier described by Latino parents is the tendency to keep problems “behind closed doors” in Mexican culture. One parent reported “part of the problem is that cul-turally we [Mexican people] don’t tend to air our problems” and that this can be a major barrier to seeking help.

• Some parents also reported that other family members often “dismissed” their child’s ASD diag-nosis and were often the “first to judge” and question whether there was truly something wrong with the child. Parents reported resistance from family when taking their child for assessments, with family members believing nothing was wrong and the mother was “crazy” for taking the child to see psychologists or other providers.

Parents as the Ultimate ResourceWhen asked about the people in their lives who have been most helpful and supportive in their process of dealing with their child’s ASD diagnosis, parents were almost unanimous in citing other parents. Whether this was in a more formal setting such as a parent support group of more infor-mally through networking, respondents found that other parents also dealing with identifying and obtaining the best services for their autistic child were the best resource for them.

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