To qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Five focus groups and four qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audio recorded and transcribed. Transcripts were coded by two researchers, and data were analyzed using thematic analysis.
MLwiN Version 2. At the slightest suspicion, refer them. Technical report--racial and ethnic disparities in the health and health care of children. This study has important limitations. Barriers to specialty care and specialty referral completion in the community health center setting. That I think is a big one. Racial and ethnic differences in subspecialty service use by children with autism. Learning disabilities showed Aspergers syndrome in latinos association with ethnicity after adjustment for covariates.
Busted mr biggs and r kelly. Associated Data
Archived from the original on 13 March That is, until ,atinos asks him about his favorite topic at the time, and then the conversation ends. I love him with all my heart and just want to know how to work with this and not against it. Well the sale day came and he was there when he should have been at work. In fifth grade I wrote a 12 page short story when the teacher told syndrkme we only had to do three. The husband needs to Aspergers syndrome in latinos that some of his odd behaviors are unacceptable and can irritate her. Billie, reading your comment was like reading something I might have written. Carnegie's "How to win friends and influence people. ICD - 10 : F I've always found it hard to connect with people, but when I do I make good friends and I am a pretty good Lesbian strap on big in return. As a child, we moved a lot, and each time we Aspergers syndrome in latinos, I had to start over, socially.
- Asperger's syndrome is a neurobiological disorder considered to be part of the autism spectrum.
- Children with autism are frequently viewed as aloof and uninterested in others.
Palmer, T. Walker, and C. Miller originated the study. Palmer performed the analysis and supervised all aspects of its implementation. Bayles contributed to writing pertinent sections. All authors conceptualized ideas, interpreted findings, and reviewed drafts of the article. Socioeconomic factors failed to explain lower autism prevalence among Hispanic schoolchildren in Texas.
These findings raise questions: Is autism underdiagnosed among Hispanics? Are there protective factors associated with Hispanic ethnicity? Some studies report lower prevalence of autism among Hispanics than among non-Hispanic Whites. We tested the hypothesis that socioeconomic factors, including the local density of diagnostic physicians, might explain the reported differences in autism prevalence between Hispanics and non-Hispanic Whites.
A positive answer to this question would suggest that underdiagnosis is prevalent and that access to care is preventing both diagnosis and treatment in many Hispanic children. If socioeconomic factors do not explain the disparity, the answer may lie in genetic vulnerability or heightened exposure to not-yet-identified environmental factors.
Administrative data for the school year for Texas school districts counties from the Texas Education Agency provided demographic and diagnostic information. Statewide, students 0. We obtained autism counts per district autistic disorder only, excluding other autism spectrum disorders by special request. County-level covariates obtained from the Area Research File compiled by the Health Resources and Services Administration, US Department of Health and Human Services, 7 included population density estimated persons per square mile by county for ; number of pediatricians, child psychiatrists, and neurologists the sum of these health professionals calculated as the ratio per 10 individuals ; and median household income in We applied an overdispersion correction to the model because the means and variances were not equivalent.
We fit the Poisson model with MLwiN multilevel modeling software to obtain unbiased standard errors, to account for nested data. Descriptive statistics are shown in Table 1.
Table 2 shows the Poisson regression coefficients and relative risk for each outcome variable. This model contained no covariates and represented the direct effect. Ellipses indicate nonsignificance. Learning disabilities showed no association with ethnicity after adjustment for covariates. Whether lower autism prevalence in Hispanics is attributable to other, still-unexamined socioeconomic e.
Because we conducted an ecological, hypothesis-generating study, our findings should be interpreted with caution. Our data were also limited in scope. First, it is known that autism has been underreported in school-based administrative data. However, although diagnoses were not standardized in our data, considerable evidence exists that diagnoses of autistic disorders are made with good reliability and specificity in the field.
In addition, our data contained no information on place of birth, occupational history, or detailed information about ethnicity. Although Hispanics are a diverse group, the census indicates that those living in south Texas are primarily of Mexican descent.
Overall, we found significantly lower autism rates among school districts with a predominance of Hispanic children than among districts with a predominance of non-Hispanic White children. It is curious that key socioeconomic community indicators explained the higher diagnosis rates among non-Hispanic Whites but failed to explain the lower rates in predominantly Hispanic school districts. National Center for Biotechnology Information , U.
Am J Public Health. Raymond F. Miller , MD, MS. Author information Article notes Copyright and License information Disclaimer. At the time of the study, Raymond F.
Corresponding author. Correspondence can be sent to Dr. Contributors R. Accepted May 15, This article has been cited by other articles in PMC.
Open in a separate window. Human Participant Protection No protocol approval was required because data were obtained from secondary sources.
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Aspergers syndrome in latinos. You might also Like
Undiagnosed kids still grow up to be autistic adults, and a lot of them get married and have babies. So what about the undiagnosed autistic Hispanic teens and adults who are past the age for a verbal screening for autism?
I will say this about myself though: I hate being misunderstood. I was a Hispanic child with no diagnosis and a whole mess of weird issues.
I knew I was different from the kids at school, because I was always lost on social situations. But I was book smart, and I would read six fiction books or so a week. Once I got out how I felt, the anxiety of trying to get all my words together went away and I felt ten times better. My parents never took me to a psychologist.
I was too much like other family members , so I was given coping mechanisms, not medicine. They both just corrected my terrible social skills as I messed up. And although they handled that very differently, they loved me for who I was. I went through a summer before I was 20 where I felt nauseous every time I ate and a lot of times I would threw up.
I went to the doctor, and tried to explain my symptoms to him. He said I had irritable bowel syndrome. Irritable bowel syndrome is a disorder that affects the large intestine, with symptoms including diarrhea, constipation, cramping, bloating and gas. There is no known cause. I was confused as to why he thought my problem had to do with my large intestine when my primary reason for visit was vomiting.
From my stomach. Eventually a nurse practitioner diagnosed me with GERD and a hyperacidic stomach. Another time, when I was around 24, I went to the doctor because I was having trouble eating. Even the thought was making me nauseous and a few times I threw up. Alexithymia is the worst. Did I mention that people on the spectrum often have gastrointestinal disorders? My advice to physicians?
Doctors often rush to treat the symptoms and not figure out the cause. My advice to patients? Speak up. Historical considerations". Canadian Journal of Psychiatry. Early intervention for autism spectrum disorders: a critical analysis. Amsterdam: Elsevier Science. Archived from the original on 13 February Retrieved 20 February DSM-5 Development. Archived from the original on 25 December Retrieved 21 December Annals of Saudi Medicine. Retrieved 6 November Pervasive developmental disorders".
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Audio help. Pervasive developmental disorders and autism spectrum F84 , Autism spectrum High-functioning autism Classic Autism Asperger syndrome Pervasive developmental disorder not otherwise specified Childhood disintegrative disorder Rett syndrome. Alexithymia Attention deficit hyperactivity disorder Anxiety disorder obsessive—compulsive disorder Late talker Epilepsy Fragile X syndrome Hyperlexia Savant syndrome Sensory processing disorder Intellectual disability Developmental coordination disorder Multiple complex developmental disorder.
Autism-related topics Fictional characters Schools. Adult personality and behavior. Ego-dystonic sexual orientation Paraphilia Fetishism Voyeurism Sexual maturation disorder Sexual relationship disorder. Factitious disorder Munchausen syndrome Impulse control disorder Dermatillomania Kleptomania Pyromania Trichotillomania Personality disorder. Childhood and learning. X-linked intellectual disability Lujan—Fryns syndrome. Pervasive Specific. Mood affective. Neurological and symptomatic. Delirium Organic brain syndrome Post-concussion syndrome.
Neurotic , stress -related and somatoform. Adjustment disorder with depressed mood. Depersonalization disorder Dissociative identity disorder Fugue state Psychogenic amnesia. Physiological and physical behavior. Postpartum depression Postpartum psychosis. Arousal Erectile dysfunction Female sexual arousal disorder Desire Hypersexuality Hypoactive sexual desire disorder Orgasm Anorgasmia Delayed ejaculation Premature ejaculation Sexual anhedonia Pain Nonorganic dyspareunia Nonorganic vaginismus.
Psychoactive substances, substance abuse and substance-related. Schizophrenia , schizotypal and delusional.
Brief reactive psychosis Schizoaffective disorder Schizophreniform disorder. Childhood schizophrenia Disorganized hebephrenic schizophrenia Paranoid schizophrenia Pseudoneurotic schizophrenia Simple-type schizophrenia. Categories : Spoken articles Asperger syndrome Autism Childhood psychiatric disorders Genetic disorders by system Learning disabilities Mental and behavioural disorders Neurological disorders Neurological disorders in children Pervasive developmental disorders Psychiatric diagnosis Syndromes Words coined in the s.
Restricted interests or repetitive behaviors, such as this boy's interest in playing with a toy model of molecules, may be features of Asperger's. Problems with social interactions, restricted and repetitive behavior . Before two years old . Long term .
To qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Five focus groups and four qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audio recorded and transcribed.
Transcripts were coded by two researchers, and data were analyzed using thematic analysis. Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community.
The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. Additional educational outreach to Latino families, de-stigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.
Reasons for ethnic variation in ASD diagnosis are poorly understood. Diagnostic delays may also reflect family and community factors, such as parent beliefs about ASD and developmental delay, awareness of ASDs, health literacy and acculturation, and logistical issues such as difficulties with transportation and child care.
Therefore, the goals of this study were to assess barriers to ASD diagnosis in the Latino community. We used a qualitative research design based on focus groups and individual interviews with parents of Latino children previously diagnosed with ASD; this research strategy is useful for gaining a deeper understanding and for generating hypotheses in areas where knowledge is limited.
In addition, we elicited specific barriers that families experienced seeking ASD care. We recruited parents of Latino children with ASD to participate in a focus group or semi-structured interview. Participants were recruited from a university autism clinic research registry, a county developmental disabilities service, and a community advocacy organization for Latino children with disabilities. We used purposive sampling 20 to include parents in urban and rural areas, and parents with English or Spanish primary language.
Participants were initially approached via mail and telephone; interested individuals were invited to participate in a focus group in their geographical area and preferred language.
We made special efforts to accommodate parents facing barriers to attendance by reimbursing for public transportation, and providing food and child care. Recruitment continued until we reached thematic saturation. Focus groups were conducted by a bilingual Latina facilitator and a bilingual research assistant.
Groups were conducted in English or Spanish, took place at community settings in Oregon, and lasted approximately ninety minutes. Individual interviews were conducted by a bilingual research assistant at a time and place convenient for the parent.
Verbal informed consent was obtained prior to interviews or focus groups. Interviews and focus groups followed the same interview guide Appendix Table 1 which was informed by literature on delayed diagnosis for other developmental and behavioral disorders. The facilitator asked probing and clarifying questions or asked participants to elaborate on emerging themes. After the focus group or interview, parents completed a survey assessing child and parent demographic characteristics Table 1.
Focus groups and interviews were audio-recorded and transcribed verbatim in their original language. Data were analyzed using thematic analysis, an inductive approach at the semantic level that uses an essentialist paradigm i. The PI reviewed all codes and independently coded selected transcripts. Both research assistants met with the PI after coding each transcript to resolve any coding disagreements by consensus.
The code list was updated when new ideas emerged. After initial analysis, the team met to review coding and to generate themes and subthemes. We particularly considered themes that were frequently endorsed, that were less frequently endorsed but were emphatically endorsed by some participants, and that may be unique to Latinos as opposed to all parents seeking an ASD diagnosis.
Final themes were reviewed by one Latina parent of a child with ASD to assess for face validity. Spanish quotations selected for this manuscript were translated by a bilingual team member with training in medical translation; translated passages are marked with an asterix. Median age at ASD diagnosis was 2. We identified themes describing barriers to ASD diagnosis and organized these themes into three categories: Latino community knowledge and perceptions of ASD , parent and family factors , and health care system factors.
From these factors, additional adverse consequences resulted. Figure 1 shows the relationship of themes to each other and to ASD diagnostic delays. Nearly all parents felt there was little knowledge about ASD in the Latino community, and that lack of knowledge impeded early ASD identification. One mother commented:. Some parents were still unsure what it was. Parents pointed to lack of attention to ASD in the Latino media relative to mainstream media as one important cause of low information availability.
Children in Mexico might behave differently, or have a disability, but these children would not be labeled with a medical condition:.
No one knows about it. Mental health and disability stigma prevented parents from seeking care. Parents thought many in the Latino community perceived disabilities, and particularly mental health problems, as embarrassing or shameful, and that this might be a reason that families did not discuss developmental concerns with community members, health care providers, or even each other.
Or if the mother goes outside the house to talk with someone selling something, she closes the door so no one can see him. Parents felt that in many Mexican communities, a family of a child with ASD would hide a child that acted differently. Community members might think that the child was improperly disciplined especially, in need of spankings. They might also think that the child was crazy, had an intellectual disability, or had Down syndrome. Machismo, or a traditional view of Latino male gender roles, 23 was perceived by mothers as particular problem for their male partners.
Even parents in English focus groups and interviews pointed to LEP as a barrier for other parents who spoke English less well. Language issues made scheduling appointments and arranging transportation particularly difficult. Poor interpreter access or quality also made it difficult for parents to express their concerns and navigate the diagnostic process.
A lot of these parents are also immigrants. That I think is a big one. Some parents worked multiple poorly-paying jobs, in temporary or seasonal work, with no flexibility to take days off to take their child to appointments. Experiences with primary care providers were mixed. Some parents felt their provider helped them obtain an ASD diagnosis quickly; others felt their concerns were ignored.
Some parents switched health care providers several times before finding one who took their concerns seriously. One parent recounted such dismissive behavior:. There are some children that start to talk at 3 years. Sometimes not all children speak early, others [speak] late. Few parents thought that these behaviors were due to bias or racism; however, some English speakers felt that providers underestimated their level of education or understanding, and many Spanish speakers felt that language barriers prevented them from expressing their concerns optimally with providers.
Getting an ASD diagnosis often entailed visits with multiple medical and school personnel. There were often long waits to get care. Because many providers were involved, and did not communicate well, the process felt slow and disjointed. So that made it really, really difficult to be able to get any kind of answers and any kind of help for [child]. The complexity of the process was particularly challenging for less acculturated families. Many small delays added up to larger delays for parents seeking diagnosis and treatment for their child.
Getting a diagnosis for many families meant arranging child care for other children, taking time off from work, and often having to rely on medical transportation or public transit to take them long distances. Given that many children with ASD have challenges with sensory issues, changes in their routine, and interacting with strangers, ASD diagnostic evaluations were often unpleasant for the child.
This was particularly the case for families who had to come for multiple visits. These factors may have made parents reluctant to follow up after an initial experience, especially if that experience was a negative one.
As a result, parents doubted their concerns or delayed taking action on them. As many parents noted, even doctors are confused about ASD, which has no clear cause or cure. This was particularly the case for children with diagnoses of pervasive developmental disorder, not otherwise specified PDD-NOS ; parents were unsure whether the child really had ASD or not. Parents often left their diagnostic appointments unsure exactly what their child had, or what to do next.
Receiving an ASD diagnosis was stressful for many families, and many needed time to emotionally adapt, which may have delayed care-seeking. What am I going to do? Who do I have to go talk with?
Several parents also speculated that other Latino parents purposefully avoided seeking out an ASD diagnosis because it would be too depressing to accept that the child had a serious problem. However, as the process stretched out over time, parents became frustrated.
One parent suggested that perhaps providers were deliberately making services difficult to access for Latinos in order to save money. Another felt that her ASD diagnostic visit was mainly for conducting autism research rather than for diagnosing her child. In this study, we found that Latino parents faced many difficulties in the ASD diagnostic process.
In the community, families found little information about ASD. Parents had difficulty accessing care due to poverty, limited English proficiency, and lack of awareness of, or advocacy for, disability services for their child.
When they did access care, they were sometimes inappropriately reassured by providers and participated in a diagnostic process that was often confusing, time-consuming, inconvenient, and unpleasant for their child. Parents had to struggle with or circumvent normal processes to get the care their child needed. Although little else is specifically known about barriers to ASD diagnosis in Latinos, our study is consistent with recent research suggesting high levels of overall unmet service need in Latino families of children with ASD.
Our finding that Latino parents are reassured by providers about their developmental concerns, and are confused about access to developmental care, is consistent with other recent qualitative studies of minority families.
In particular, our findings about the relationship of machismo with care-seeking, as well as the degree of denial and normalization that Latino parents experience, could be important targets for future community-based interventions seeking to reduce ASD diagnostic disparities. This study has important limitations. First, data were collected retrospectively, and may be subject to recall bias, or may not reflect current health care barriers.
This analysis was also based on the experiences of families who were ultimately successful in accessing ASD diagnoses, and many received a diagnosis relatively early compared to other samples of Latinos. Others, such as machismo, could be similar in other cultures, but may be framed differently by Latinos. Further research is needed to understand which of these barriers represent ethnic differences or disparities.