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Late Autism Diagnosis: Latino Children

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  • 1. Late Autism Diagnosis: Latino Children Clarisa Carina Romero Collaborative Health & Human Services Advocacy Report CHHS 302
  • 2. LATE AUTISM DIAGNOSIS: LATINO CHILDREN Romero 4 Introduction It has been researched that Latino children are getting diagnosed with autism two years later than non-Hispanics would. “Most of the pediatricians reported that they had particular difficulty identifying autism risk in families who spoke primarily Spanish diagnosis” (Autism Speaks Listen Know, 2013). Many Latino families do not know what autism is, let alone the symptoms. If the pediatrician is not able to identify the risk of autism, the family will not be able to identify them either. Not being able to figure out the risks or symptoms in children is the start of misdiagnosis or late diagnosis of autism. Doctors find it more difficult to diagnose Latino children because of different barriers. The rate of Hispanics with autism is one of the lowest and it is all because of how difficult it is to communicate with the parents and the children (Magaña, Lopez, Aguinaga, & Morton, 2013). The graph below, the first section shows the total population. Then it splits off by race and by year, both in numbers and in percentage. The second part shows the Autistic population and is separated the same way. It shows that in 2006, out of 504 children with autism only 138 of them are Hispanics. (Cunniff, Gotschall, Grebe, Kessler, Mancilla, Meaney, Pedersen, Pettygrove; 2012) Background   Autism is one disorder from Autism  Spectrum  Disorder  (ASD)  (CDC,  2010).   “Autism is one of a group of serious developmental problems called autism spectrum disorders that appear in early childhood — usually before age 3. Though symptoms and severity vary, all autism spectrum
  • 3. LATE AUTISM DIAGNOSIS: LATINO CHILDREN Romero 5 disorders affect a child's ability to communicate and interact with others” (Mayo Clinic, 2013). Autism affects the development of the brain which helps the ability for the to socialize, communicating and with their cognitive thinking function (National Autism Association, 2013). Those with autism have a hard time socializing with others as well as communicating verbally and non verbally. So they have a tendency to just be on their own. It is often found that those who suffer from autism also suffer from other medical conditions such as allergies, digestive disorders, sleeping disorders, feeding disorders, and more (NAA, 2013). Autism is found more in boys then in girls. Also autism does not affect the life expectancy. Children may pass earlier because of drowning or small incidents such as that (NAA, 2013). Detecting autism is very hard since there are no tests that can be done to make sure that a child is autistic. Pediatricians can detect autism at the 18 months of age or early (CDC, 2010). Late diagnosis can affect the progress he/she can make by not getting the treatment needed (CDC, 2010). There are two steps in diagnosing autism. The first step is to be screened for developmental delays and disabilities during every regular doctor visit starting from 9 months and follow up after every 9 months and stop once the child has reached 25 or 30 months. Extra screenings may be needed if the child was born prematurely, underweight or other problems (CDC, 2010). Then there is to be another screen specifically for ASDs during the age of 18 months and 24 months. More screenings may be done if the child is at high risk and has a sibling or family member with autism (CDC, 2010). The second step is for the child to go through a comprehensive diagnostic evaluation where the child’s vision, hearing, and behavior are evaluated. Also genetic testing, neurological testing, and other medical testing are done. In some cases the child may be referred to a specialist (CDC, 2010). There is no cure for autism but there are treatments that the child can undergo to improve social skills, communication skills, and good behavioral skill. Early intervention is key for the child (Wasmer, 2011).
  • 4. LATE AUTISM DIAGNOSIS: LATINO CHILDREN Romero 6   Causes “Primary Care Pediatricians (PCPs) experienced difficulty recognizing signs and symptoms of ASDs in Latino/Spanish PFL children, even if they performed recommended ASD screening or had >25% Latinos in their practice due to language barriers” (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). Language barrier is one of the causes that many Latino children are being diagnosed late with autism (Autism Speaks Listen Know, 2013). About 3 in 4 patients are Spanish speakers that have doctors that only speak English. Many children have Spanish as their first language and do not learn English once they have entered Pre School or Kindergarten. So the English language is so foreign to them and do not understand at all. Doctors are not able to communicate with the patients and families, therefore making it hard or even impossible to diagnose a child with autism (Autism Speaks Listen Know, 2013). Researchers have shown that even though the screening tests had been run the same as nonHispanic children to Latino children, it was still difficult to detect if the child had autism because of the language barrier (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). Pediatricians also had a harder time diagnosing Latino children because parents did not have much knowledge about autism (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). The lack of awareness is also a key as to why there are kids not being diagnosed with autism until the age of 4 or 5. Most of the Latino community is unaware of what autism is and the seriousness of what it can do to the child. Most of the flyers or pamphlets about autism are in English so the Spanish speakers do not even bother trying to read because it is in a language that they cannot understand (Autism Speaks Listen Know, 2013). Also Pediatricians realized that there is a lack of development and autism specialists that can help spread the awareness. Only 1 in 10 California pediatricians’ screenings were found in Spanish (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). In the Latino culture it is believed that the symptoms of autism will just pass and that it is just a phase. So there is no need to go to the doctor to see if there is anything wrong with the child. “The child will grow out of the awkward stage. Every child goes through it” is what the Latino culture believes in. According to studies, it shows that Latino families had cultural barriers, such as trust or pride, that were hard to detect even for the pediatrician to help out the Latino families with their disparities because they did not speak up and show that they had barriers and did not understand (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013).
  • 5. LATE AUTISM DIAGNOSIS: LATINO CHILDREN Romero 7 Here, above, is a graph that shows statistics of all the barriers that prevent early autism diagnosis among Latino children.
  • 6. LATE AUTISM DIAGNOSIS: LATINO CHILDREN Romero 8 Effects Because the family has not enough knowledge about autism there is a lack of proper care. The child will not be getting the proper attention that he/she needs to grow. According to the CDC, when a child is diagnosed with autism he or she will be provided with services to help the child learn how to grow and improve social skills and other skills to get on with life (CDC, 2013). Children need to be able to grow and have friends so that they can have a childhood that is healthy for them to prosper in the future. If the child is going on in life as if it is a child that is not autistic, the he or she will have a hard time living. Family or friends may neglect him or her because he or she may be “weird” and not someone that maybe wanted around. According to research a child with autism also suffers from other medical conditions (NAA, 2013). If the autism is not being treated then the other medical conditions are not being treated as well. This could affect the health and well being of the autistic Latino child. Another effect when children are diagnosed late is that there are no social skills or develop late social skills. By the time the child gets diagnosed with autism, he/she will already be at least 3-4 and will not have any social skills to make friends a school or to interact with any family members including children. (Autism Speaks, 2013). A child has time to improve all the social, communication, and listening skills if treated early. As the child gets older it will just be tougher for the family and the child because the older the child is the harder it will be to make progress.
  • 7. LATE AUTISM DIAGNOSIS: LATINO CHILDREN Romero 9 Solutions There  is  time  to  fix  the  problem  of  Latino  child  being  diagnosed  with  autism  late.     Researchers  are  doing  their  best  to  make  resources  accessible  to  Spanish  speakers  so  that   Latino  children  can  have  early  diagnosis  (Autism  Speaks  Listen  Know,  2013).    There  is  a   program  that  is  called  Autism  speaks  early  access  to  Care  to  translate  all  resources  into   Spanish  so  that  the  Latino  population  can  be  involved  in  the  Autism  Speaks  campaign.  This   can  help  the  screenings  as  well.  It  is  a  perfect  way  to  reach  out  to  the  minorities.       There needs to be more awareness in the hospitals and clinics by mentioning autism and symptoms by Spanish-speaking pediatricians so parents can get familiar with autism and the symptoms. “Multiple factors in the primary care setting may contribute to delayed ASD identification for Latinos. Promoting language-appropriate screening, disseminating culturally appropriate ASD materials to Latino families, improving the specialist workforce, and providing PCP support in screening and referral of Latino children may be important ways to reduce racial and ethnic differences in care.” (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). Having Spanish-speaking pediatricians see the patients that only speak Spanish so that the language barrier between pediatricians and patients and their families can be cleared. Language should not be an excuse for Latino children to have late diagnosis. Not just telling them about the screenings but also telling them what autism is. Explain the definition of autism, how a child can get autism, the symptoms, and treatments that a child can undergo if diagnosed. Latino families have no knowledge what autism is, let alone that it even exist (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). What clinics need to do is explain different disorders that a child is at risk at, or the fastest growing disorder so that the family can get familiarized and be on the look for. That way when the child is born and has its regular visits, autism can be easier to detect and screenings can be done to figure out if the child is autistic or not.  
  • 8. LATE AUTISM DIAGNOSIS: LATINO CHILDREN 10 Romero Conclusion and Recommendation The numbers of children with autism is rising more now than before but the numbers of Latino children who have autism is still low (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). The numbers are low because of different barriers such as language and knowledge about autism. When children get diagnosed after the age of three, it is considered late diagnosis (NAA, 2013). Late diagnosis of autism can affect the health of a child and their development such as living skills that a child learns around the age of 3 will not be developed yet until proper care is given. Many services provided are often in English where it is difficult for Latino families to understand. The late diagnosis of autism among Latino children needs to stop and something needs to happen. There are many things that can be done to prevent late diagnosis in the Latino community. If knowledge about autism is advocated to the Latino families, it could be the first step to stop the late diagnosis. After more Spanish speaking pediatricians can be located in the Latino communities to help with doctor visits and someone who better understands the culture to improve services such as screenings and provided references for the families to seek the treatment and care that is needed (Baghaee, Batbayar, Bethell, Donelan, Mattox, Zuckerman; 2013). Recommendations: • More  Spanish-­‐speaking  pediatricians   • Resources  provided  in  Spanish  for  families     • Spread  awareness  of  what  autism  is  in  the  Latino  communities,  especially  in  clinics   and  hospitals.    
  • 9. LATE AUTISM DIAGNOSIS: LATINO CHILDREN 11 Romero Reference Wasmer,  M.  (2011).  What  is  Autism?.  Training,  121(450),  7576.  Retrieved  from:   http://www.autismdeservesinsurance.com/uploads/1/7/3/5/17359259/overv iew_of_autism_and_intensive_early_intervention.pdf   Autism  Speaks  Listen  Know:  Facts  About  Autism.  (2013).  Retrieved  from:   http://www.autismspeaks.org/what-­‐autism/facts-­‐about-­‐autism   Autism  Speaks  Listen  Know:  Study  Assesses  Pediatricians’  Role  in  Delayed  Autism  Diagnosis   among  Latinos.  (2013).  Retrieved  from:   http://www.autismspeaks.org/science/science-­‐news/study-­‐assesses-­‐ pediatricians%E2%80%99-­‐role-­‐delayed-­‐autism-­‐diagnosis-­‐among-­‐latinos   Baghaee, A; Batbayar, O; Bethell, C; Donelan, K; Mattox, K; Zuckerman, K. (2013). Pediatrician Identification of Latino Children at Risk for Autism Spectrum Disorder. Pediatrics 2013; 132:3 445-453; published ahead of print August 19, 2013, doi: 10.1542/peds.2013-0383. Retrieved from: http://pediatrics.aappublications.org/content/132/3/445 Centers for Disease Control And Prevention (CDC): Autism Spectrum Disorders (ASDs). (2013). Retrieved from: http://www.cdc.gov/ncbddd/autism/data.html Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to Diagnosis and Treatment Services Among Latino Children With Autism Spectrum Disorders. Intellectual & Developmental Disabilities, 51(3), 141-153. Doi: 10.1352/1934-9556-51.3.141. Retrieved from: http://web.ebscohost.com.library2.csumb.edu:2048/ehost/detail?vid=3&sid=a3b874426c6c-4ac6-bd61478ce8d05361%40sessionmgr12&hid=18&bdata=JnNpdGU9ZWhvc3QtbGl2ZQ%3d%3 d#db=aph&AN=89366567 MayoClnic: Autism. (2013). Retrieved from: http://www.mayoclinic.com/health/autism/DS00348. National Autism Association. (2013). Retrieved from: http://nationalautismassociation.org/resources/autism-fact-sheet/ Pedersen, A; Pettygrove, S; Meaney, J; Mancilla, K; Gotschall, K; Kessler; D.B; Grebe, T.A and Cunniff; C. (2012). PEDIATRICS official journal of the American Academy of Pediatrics: Prevalence of Autism Spectrum Disorders in Hispanic and Non-Hispanic White Children. DOI: 10.1542/peds.2011-1145. Retrieved from: http://pediatrics.aappublications.org/content/early/2012/02/15/peds.2011-1145.full.pdf (Cunniff, Gotschall, Grebe, Kessler, Mancilla, Meaney, Pedersen, Pettygrove; 2012)