Navigating the Untamed Waters of Autism

Autism was not what she expected, but Monica Velasco knew that something was wrong.

Two years ago, Velasco noticed that her two youngest daughters, who were 3 and 4, were still talking like babies, didn't like to be around people and felt irritable when they attended social and family gatherings. As her concerns started to grow, she began to visit different specialists.

"My daughters' neurologist said they were completely normal but their speech therapist and their school told me they had autism," said the 31-year-old housewife and mother of three from Hutto, Texas.

Velasco, a native of Mexico who has limited English proficiency, said she was extremely confused because her daughters' pediatrician told her to believe their neurologist's diagnosis. However, she didn't want to take any risks and took her daughters to Aguascalientes, Mexico, to receive a second opinion in her own language and culture.

Velasco's mother referred her to a local neurologist who confirmed that Kate, now 5, had a severe form of autism while Lissete, now 6, had a milder type.

Autism is one of a group of developmental disorders known as autism spectrum disorders (ASDs), according to the Centers for Disease Control and Prevention (CDC). Even though the severity of the disorder may vary, people with autism experience impairments in language, learning, thinking and interacting with others.

Researchers haven't been able to accurately identify what causes autism yet, but it develops due to abnormalities in the structure or function of the brain, according to the Autism Society of America . Potential causes are genetic and environmental factors, as well as the intake of some substances during pregnancy. The CDC's studies on vaccines and ASDs[PDF, 59KB] also continue.

Recommendations from the American Academy of Pediatrics (AAP) indicate that pediatricians should screen children for ASD at 18 and 24 months. In addition, they highlight that physicians should especially listen to parents regarding their child's developmental abilities.

"I don't speak English very well, I can understand some but I don't practice enough because I spend most of my time at home taking care of my girls," Velasco said. "A lot of people from my daughters' school had to help me navigate the system because there is little information in Spanish."

However, Velasco is not traveling this path alone and was able to find other parents like her.

"When I suspected that something was wrong with my son's development I started to look for answers, but my family told me nothing was wrong, and the pediatrician said we had to wait," said Maria Teresa Abinader, 34, creator of Manitas Por Autismo , an association of Spanish-speaking parents of children with autism that provides resources, information and online support groups for families.

Abinader, who is a mother of four children living in Middlesex County, N.J., said that while keeping track of her youngest son's development, she realized that he was acting differently from her older offspring.

Although her son's pediatrician told her each child develops differently, the bilingual woman of Dominican origin said her instincts told her otherwise.

"We had a birthday party for my son when he turned 2 and he wouldn't interact with anybody else, he was completely in his own world," she said. "When I compared his behavior with the rest of the children his age who were invited, it was like a splash of cold water."

Obstacles in obtaining an early diagnosis not only came from doctors' failure to diagnose, but from her own family's prejudices and cultural beliefs, Abinader said, adding that Latinos tend to minimize the severity of neurological disorders when they don't see visible physical disabilities.

According to the National Institute of Neurological Disorders and Stroke (NINDS), signs that parents should consider unusual include: the inability of their child to interact with peers; a tendency to determinedly repeat the same routines; use of repetitive language; obsession with the same object; and inability to start or maintain a conversation with others. Data from the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network show that 1 in 150 children have been diagnosed with ASD in the United States.

Informing Spanish-speaking parents and building advocacy associations are keys to overcoming the challenges that Latino families are facing, said Emily Iland, private consultant, autism advocate and author of Autism Spectrum Disorders from A to Z and its Spanish version, Los Trastornos del Espectro de Autismo de la A a la Z.

Iland, who also has a son with autism and is the secretary of the Los Angeles Chapter of the Autism Society of America , said that what inspired her to help Spanish-speaking parents was attending a conference where she met a man who was disconcerted because he couldn't find any information in Spanish about autism.

"The man started to cry," Iland said. "My wife doesn't speak English. How will she understand how to help our child?"

"Lack of information make parents feel isolated and lost," Iland added.

Velasco said Kate and Lissete are sensitive to light, noises and crowded places and they feel more comfortable being at home. Velasco's 10-year-old daughter, Vanessa, is very patient and looks after her little sisters, she said.

"My oldest daughter tells me that she would like to be a doctor to help her sisters," she said.

Even though improvement is gradual, Velasco explains that her daughters are responding well to speech and occupational therapies and they are showing some progress, especially Lissete, who is becoming fluent in English.

"I believe my daughters will get better," she said. "As parents we need to have faith, look for information, and always ask for more than one medical opinion."

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Isaac Itman is a writer for OMHRC. Comments? Email: info@omhrc.gov

Links

Manitas Por Autismo
http://www.manitasporautismo.com/index.html

Autism Society of America
http://www.autism-society.org/site/PageServer

National Autism Association
http://www.nationalautismassociation.org/

National Dissemination Center for Children with Disabilities
http://www.nichcy.org/

US Autism & Asperger Association
http://www.usautism.org/

Association for Science in Autism Treatment
http://www.asatonline.org/

Autism Speaks
http://www.autismspeaks.org/

Asperger's Association of New England
http://www.aane.org/

Autism Spectrum Disorder Foundation
http://www.autismspectrumdisorderfoundation.org/podcasts_psa_earlydetectionvideo.html

Centers for Disease Control and Prevention
http://www.cdc.gov/ncbddd/autism/

American Academy of Pediatrics
http://www.aap.org/healthtopics/autism.cfm

National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov/

National Institute of Child Health and Human Development
http://www.nichd.nih.gov/publications/pubskey.cfm?from=autism

Vaccine Safety
http://www.cdc.gov/vaccinesafety/

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Publications Autism Spectrum Disorders from A to Z Autism Spectrum Disorders. Pervasive Developmental Disorders [PDF, 644KB] Autism and Genes [PDF, 580KB] Autism Overview: What We Know

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Podcasts Prevalence of Autism Spectrum Disorders[MP3, 14:44 Minutes, 10MB] Learn the Signs of Autism<[MP3, 59 Seconds, 470KB] Developmental disabilities: Act Early[MP3, 59 Seconds, 928KB]

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