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Sunday, June 3, 2012

FINAL CALL: Autism - Missed diagnosis, missed opportunity


By Saeed Shabazz  -Staff Writer- | Last updated: May 24, 2012 - 9:32:51 AM

Parent, advocates fight racial disparity in services, care for Autistic children


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Eight-year-old Carl Woody suffers from autism. His mother, Claire Woody, is a member of Family Voices of D.C., which advocates on behalf of Black and Latino children who have the behavioral disorder. Photo courtesy of Claire Woody
(FinalCall.com) - For 20 years Lisa Alexander, of Stafford, Va., has been fighting for her son Reginald who is autistic. She has battled school administrators, doctors and law enforcement officials—anyone who she feels has hindered getting services her son needs.   
    
“I did not know the word ‘Autism.’ They kept telling me at the beginning of his formative years about Attention Deficit Hyperactivity Disorder (ADHD), and saying I should put him on medication which I did not do,” Ms. Alexander told The Final Call.

According to the National Institute of Mental Health, Autism is a group of developmental brain disorders, collectively known as “Autism Spectrum Disorder.” The term “spectrum” refers to the wide range of symptoms, levels of impairment or disability and skills children with the disorder may have.

“Some children show signs of autism in early infancy. Other children may develop normally for the first few months or years of life but then suddenly become withdrawn, become aggressive or lose language skills they’ve already acquired. Though each child with autism is likely to have a unique pattern of behavior,” according to an article posted on www.mayoclinic.com.

The behaviors may be related to social skills, such as failing to respond to his or her name, poor eye contact, appearing not to hear at times, resistance to cuddling and holding, an apparent lack of awareness of others’ feelings, seeming preference to play alone (retreat into his or her ‘own world’), to language difficulty, such as talking later than age two other developmental delays, losing previously acquired ability to say words or sentences, not making eye contact when making requests, speaking with an abnormal tone or rhythm (may use a singsong voice or robot-like speech), inability to start a conversation or keep one going, repeating words or phrases verbatim, but doesn’t understand how to use them, said the article.

Physical behaviors may include performing repetitive movements, such as rocking, spinning or hand-flapping, developing specific routines or rituals, becoming disturbed at the slightest change in routines or rituals, constant movement, fascination with parts of an object, such as the spinning wheels of a toy car, may be unusually sensitive to light, sound and touch and yet oblivious to pain, said the mayoclinic.com article.
“As they mature, some children with autism become more engaged with others and show less marked disturbances in behavior. Some, usually those with the least severe problems, eventually may lead normal or near-normal lives. Others, however, continue to have difficulty with language or social skills, and the adolescent years can mean a worsening of behavioral problems,” it continued.

“Most children with autism are slow to gain new knowledge or skills, and some have signs of lower than normal intelligence. Other children with autism have normal to high intelligence. These children learn quickly yet have trouble communicating, applying what they know in everyday life and adjusting in social situations. A small number of children with autism are ‘autistic savants’ and have exceptional skills in a specific area, such as art, math or music,” the article noted.

“If a Black child twitches in a chair, they say he has ADHD. The problem is there is very little culturally-aware literature or programming available for Black and Latino parents who have an Autistic child,” said Jay Coleman, a District of Columbia school teacher with a Masters in Special Education, specializing in emotional and behavioral disorders.

“The system will use your ignorance against you,” Mr. Coleman continued. The bottom line is access to resources, Mr. Coleman said, adding, “That is why it is important to emphasize the need for the right literature for Black and Latino parents.” He has put together a grassroots entity SlickFish LLC, available online at www.slickfish.org and on Facebook, SlickFish Education and Therapy.
Medical professionals say three-years-old is the latest a child should be diagnosed for a utism. “When I asked why it took so long for the right diagnosis, I was told my son had simply slipped through the cracks,” Ms. Alexander said. Many Black families lose out by not getting a correct and timely analysis, she added. She formed a grassroots online movement, “A Voice for Neli,” to focus attention on the plight of families facing Autism service disparity.

Doreen Hodges, executive director of Family Voices of the District of Columbia, Inc., told The Final Call there are 16,032 children in the District of Columbia diagnosed with special health care needs from A to Z: “However, we find most of the Black and Latino boys are diagnosed as having ADHD.”

Ms. Hodges shared plans for a rally the first week of June at city hall. The purpose is to call attention to the need to provide grassroots’ counseling for families with autistic children on how to access public services, such as early intervention testing.

“White children are diagnosed as early as 18 months; but for most of our families the children are normally diagnosed at eight- or nine-years-old,” explained Ms. Hodges.
The delay in diagnosis leads to greater challenges for families, more stress and anxiety, and poorer developmental outcomes, she added.

Ms. Hodges said her five-year-old was observed by someone riding the subway and who helped point her in the right direction to get him help. “And it still took me 250 phone calls before getting the right agency to provide the Intense Behavior Analysis to stop him from doing things that were harmful,” she recalls laughing.” He was four-years-old at the time.

Family Voices plan to use the rally as a means to convince the D.C. City Council, and the city’s Dept. of Health to spend some of the over $2 million available for grassroots grants on a health leadership program. “The money must be spent by September and we need the grant money to form a support group that informs Black and Latino families on where to access the information on available services for their Autistic children,” Ms. Hodges said.

“Later interventions result in a poorer developmental outcome that can have a lasting impact on the child’s and the family’s quality of life,” notes Dr. Martell Teasley, associate professor at the Florida State University at Tallahassee College of Social Work. “No one is advocating for African American children nationally; it is widely known that our children are getting the later diagnosis for autism,” he told The Final Call.
There are no subjective criteria for diagnosing a utism; only brain scans can truly provide appropriate diagnoses, “because we are dealing with biological and chemical imbalances in the brain,” explained Dr. Teasley. Dr. Teasley co-authored a study that examines the disparity, “About one in every 110 children is diagnosed with autism. There is no racial disparity in the rates in which Black and White children are diagnosed,” The Journal of Blacks in Higher Education noted a short reference to Dr. Teasley’s study.
The answer to the disparity is forming grassroots self-help advocacy groups “because the national advocacy people don’t care about the African American child,” Dr. Teasley stressed.

The Final Call contacted Autism Speaks, which promotes itself as the nation’s largest Autism science and advocacy organization, for their view on Autism service and diagnosis disparity. “Children and parents of higher socio-economic status are in general diagnosed earlier,” Autism Speaks admitted in an e-mail.
“Differences in the age of diagnosis among ethnic groups may be due to differences in access to health services, including diagnostic services,” it continued. “Autism Speaks has launched a new initiative aimed at better understanding the barriers that families of diverse ethnicities experience when trying to access autism services,” the e-mail said.

The Autism advocacy organization said its goal was for more families “to identify Autism earlier and to receive intervention services earlier.”

The Centers for Disease Control’s Science Office was also contacted and e-mailed a response: “Data from the CDC’s Autism and Developmental Disabilities Monitoring Network has been used to document racial and ethnic disparities in identification of children with Autism. The data points to the need for greater provider education and awareness of Autism spectrum disorders in minority populations, and more studies to better understand the source of the disparities, such as socioeconomic factors affecting access to services,” said the federal agency.

Brenda Eason of Norfolk, Va., has firsthand knowledge of the importance of getting the early diagnosis. “I had my daughter, Zaamiya, diagnosed at the age of three, and after the diagnosis, I wanted to know all I could to help her get better,” she said.

Ms. Eason advises parents not to become discouraged at the first signs that a child is having a hard time adjusting to everyday life. “Do not be in denial—use the Internet—go online and find other parents with the same issues, reach out,” Ms. Eason stressed.

Los Angeles attorney and Autism advocate Areva Martin, a mother with an Autistic child, did not allow Black and Latino parents in California to become discouraged after the L.A. Times revealed in a series of December 2011 articles that there was racial disparity in spending on services for autistic children.
The newspaper noted that the state Developmental Services Agency spent $11,723 per White child compared to $6,593 per Black child, and for the Latino child, age three to six, $7,634. “In January we launched Equality for Our Kids, a campaign to get the message out that there was a need to look closer at the disparity in spending. We sent a letter from our organization, the Special Needs Network, to the governor demanding an immediate end to the discrimination,” Ms. Martin told The Final Call.
The next step was to push for a hearing hosted by the state’s Committee on Autism, according to the author of the 2010 book “The Everyday Advocate: Standing Up for the Autistic Child.”

“At the hearing we called for legislators to provide greater accountability on how funds for people with developmental disabilities were being spent,” Ms. Martin said.

One thing discovered was that these political entities do not like revealing how they spend money in Black communities, Ms. Martin offered. “We did get a commitment from the committee chairman for better transparency,” she said, adding, “And the L.A. Board of supervisors said they would set aside $1.8 million for Black and Latino families with autistic children. I guess you can say we led the charge; but we are not done, just getting started.”

Related link:


 Autism Resource Directory (TheAutismResource.com)

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