Welcome to My African American Autism Awareness Blog!
There is a dire need for Autism Awareness and treatment in the African American and minority communities. The Centers for Disease Control in Atlanta and others report black children have significantly higher rates of mild mental retardation than white children do and socioeconomic factors cannot explain the differences. Many different issues factor into why our children have a higher risk of severe autism including but not limited to: lower incomes, limited or no access to health insurance and limited education. Join my cause so that I can build numbers and raise funds to establish AAAA’s Non-Profit (501 c3) status and make a difference for African American Autism Awareness in our communities!
African American Autism Awareness strives to develop programs to spread awareness, share resources & knowledge in the African American communities on all things autism including but not limited to sensitivity awareness, preventing misdiagnoses, funding for early intervention programs and more. Eventually our vision is to expand nationwide and provide grants, funding & assistance to all African American families eligible
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Latest News Links
- Complex Genetics of Autism Unveiled
- Prenatal Vitamins May Ward Off Autism
- Autistic Boy Starts Soda Business to Help Other Autistic Children
- Family’s Nightmare: Claims Dad Raped Autistic Daughter Part 1 and Brother’s Interrogation Part 2
- What My Autistic Twins Are Teaching Me About Love
- Researchers Say Autism Screening Not Needed
- Kids Vaccine Uptake High in the USA, But Parental Concerns Persist
- View the Toys R Us Differently-Abled Toy Guide
- Download the SWFL/Lee County Guide to Autism Resources
- A Letter from Founder of AAAA, Queen Unique (10/28/2010)
- Investigation of autism and GABA receptor subunit genes in multiple ethnic groups
- Download FREE educational software that may be useful for those struggling with Autism
- Signed, Sealed, Delivered 2 New Disability Laws | Blog
- Dear Parents: You Are Not Alone | Blog
- Maurice Snell is an African American male w/ a degree, a job, an independent life — and autism
- New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible!!!!
- Autism Treatment Acceleration Act Introduced in U.S. House
- Diet change leads to improvement for autistic child
- What Causes Autism?
- Early signs of Autism
- Is it Asperger Syndrome?
- Occupational therapy
- Bill would require insurance coverage for autism
- DVD helps kids with autism read faces and emotions
- New research brings autism screening closer to reality
- Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.
- “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments
- More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.
- Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured is foundering.
SUPPORT MY AFRICAN AMERICAN AUTISM AWARENESS CAUSE!
Now available for $25.00! ($5 of proceeds goes directly to helping establish our Non-Profit (501 c3) status.
“Awareness and education are key elements to accelerate global evolution!”
- 1 out of 150 children in U.S. have Autism
- 1 out of 90 are boys
- Affects four times as many boys as girls
- Lifetime cost of caring for a child with autism: $3.5 – $5 million
- Current annual cost to U.S.: $35 billion
- Estimated annual cost by 2010: $90 billion
- 1.5 million Americans affected
- Autism affects more children than Pediatric AIDS, cancer & diabetes combined
What is Autism?
Autism is a brain disorder and one of the five Pervasive Developmental Disorders (see all five description below) which are characterized by widespread abnormalities and impaired social interaction and communication, the ability to respond to surroundings or form relationships with others and restricted and repetitive behavior. Typically diagnosed by the time a child reaches age 2-4, the disorder was first identified by Dr. Leo Kanner more than 50 years ago and is considered a spectrum disorder because symptoms and severity vary from individual to individual. Autism and its associated behaviors have been estimated to occur in as many as 1 in 500 individuals (Centers for Disease Control and Prevention 1997). Family income, lifestyle, and educational levels do not affect the chance of Autism’s occurrence. There is no known cause for Autism, although scientists are researching many possibilities.
Leukemia: Affects 1 in 25,000 / Funding: $310 million
Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
Autism: Affects 1 in 150 / Funding: $42 million
In 2007 the National Institutes of Health Funds Allocation had a budget of $29 billion which only $80 million goes directly to autism research. This represents 0.28% of total NIH funding.
Autism Intervention Treatments Include:
- therapy to change/improve behavior
- sensory integration therapy
- vitamin/mineral supplements
- changes in diet
- speech and occupational therapy
- music therapy
- art therapy
Pervasive Developmental Disorders (PDD) are:
- Autistic Disorder
- impairments in social interaction, communication, and imaginative play prior to age 3 years. Stereotyped behaviors, interests and activities.
- Asperger’s Disorder
- characterized by impairments in social interactions and the presence of restricted interests and activities, with no clinical significant general delay in language, and testing in the range of average to above average intelligence.
- Pervasive Developmental Disorder-Not Otherwise Specified
- (commonly referred to as atypical autism)a diagnosis of PDD-NOS may be made when a child does not meet the criteria for a specified diagnosis, but there is a severe and pervasive impairment in specified behaviors.
- Rett’s Disorder
- a progressive disorder which, to date, has occurred only in girls. Period of normal development and then loss of previously acquired skills, loss of purposeful use of the hands replaced with repetitive hand movements beginning at the age of 1-4 years.
- Childhood Disintegrative Disorder
- characterized by normal development for at least the first 2 years, significant loss of previously acquired skills. (American Psychiatric Association 1994)
Queen’s Customs Online Store (all proceeds go to C.I.M.P. Fund)
Please visit my online store to shop for products ranging from Autism Awareness t-shirts, mugs, personality tees, poetry related merchandise, keychains, bumper stickers and so much more! Shop for men, women and kids and all proceeds go directly to the Cameron is My Prince Fund mentioned above. See a few of the products below or click here to see all products and as always thanks a million!
November 2010 Recommended Autism Read:
“Not My Boy!: A Dad’s Journey with Autism”
by Rodney Peete
Former NFL star quarterback Peete sheds his macho gridiron side and pours his heart out in his no-holds-barred family memoir, recounting the stresses of having a child with severe autism and the daunting challenge of realigning parental expectations. Recollecting golden memories of a supportive father’s role in his successful life, he imagines a similar time with his son, R.J., but everything changes for the worse when R.J. is diagnosed with autism at age three. His marriage almost collapses under the weight of the diagnosis while his valiant wife, Holly Robinson Peete, emerges as the child’s advocate amid Rodney’s overwhelming anger and denial, ultimately triumphant in getting R.J. the proper attention. This invaluable parental primer on guiding an autistic child through the medical and therapeutic maze along with strengthening a besieged marriage will give renewed hope to all those in the same situation. A portion of this book’s proceeds will go to autism charities. (Apr.)
Fun Places To Take Your Child/Loved One
Be Informed (Conferences, Resources & more!):
Autism Source (ASA) (Search for local resources, providers, services & support)
Download & Read Minority Student and Special Education Report (National Research Council Panel Report)
40th National Conference and Exposition (ASA) (St. Charles, Illinois)
Read my blog and get more info & links to Colored My Mind HERE
Articles on Autism in the African American Community
By Donna Ross Jones and Areva Martin, Esq.
(April 5, 2007)
(Los Angeles, CA) – What happens to children who have been diagnosed with autism or some other developmental disorder? They grow up. And, more often than not, somewhere along the way they get into trouble with the law.
An excellent case in point is the controversial July 2002 beating of 16 year-old Inglewood, CA resident, Donovan Jackson. When his father was admonished by local police for driving with expired license plates on his automobile, young Donovan was severely beaten and slammed head first onto the trunk of the police officer’s vehicle for supposedly not adhering to their commands. The incident was videotaped and it was later learned that the visibly confused and scared young man was developmentally disabled.
On any given day, approximately 130,000 youth reside in juvenile detention and correctional facilities nationwide. Studies have consistently shown that anywhere from 65 percent to 70 percent of these youth have a diagnosable mental health or developmental disorder. Approximately 25 percent are experiencing disorders so severe that their ability to function is severely impaired, according to data released by the National Center for Mental Health and Juvenile Justice.
This situation is further exacerbated by the fact that the U.S. Department of Justice reports many of its juvenile justice facilities are inadequate in their response to the needs of developmentally disabled youth in their care. These and other reports have shed light on an issue that virtually went unnoticed for decades.
Even worse, as in most other areas of the justice system, African Americans are disproportionately represented. Comprising approximately 15 percent of the total national youth population, African American youth represent 40 percent of all juveniles in detention and 60 percent of young offenders serving time in adult state prisons.
In addition, according to the U.S. House of Representatives, many of these youth are detained or placed in the juvenile justice system for relatively minor offenses and end up in the system simply because of a lack of community-based service options. And, that’s where the problem starts.
Two years ago, we formed the Special Needs Network, Inc. (SNN) to bring attention to the epidemic of autism and other developmental disorders. Working on a grass roots level to create immediate- and long-term change for families, SNN continues to seek to raise awareness about developmental disabilities, especially in the African American community, and to offer resources and other ways to navigate through the bureaucratic red tape to obtain services.
Defined as a neurological condition that occurs in children 15 to 19 months of age, autism is a developmental disability that affects a person‘s ability to communicate and socially interact with others. Four times more prevalent in males, autism is now considered a public health crisis that has reached epidemic proportions, along with other mental, physical, or learning disabilities.
Statistics released earlier this year by the U.S. Centers for Disease Control and Prevention indicate that autism is more common than previously believed with one in 150 children being diagnosed on the autism spectrum versus one in 166 two years ago.
Mothers of autistic children ourselves, we were astounded at the difficulty in finding services for our children. We were equally astounded at the numbers of children of color being diagnosed, or misdiagnosed with autism and the fact that most of these children were being diagnosed two years later than the general populous.
We now know that the only scientifically proven way to guarantee positive outcomes for children with autism and other developmental disorders is early diagnosis and intensive early intervention. Called applied behavior analysis, this early intervention is a very systematic way to teach our children about how to cope with our environment and must begin at a very early stage when the brain is still developing. We have to teach them how to function our world.
Unfortunately, most children of color are not generally diagnosed until age five years, while others are diagnosed and begin treatment by age three years. Later diagnosis equals later treatment, coupled with the fact that people of color generally have fewer resources from the start.
To help combat the lack of special needs support services and resources, Special Needs Network, Inc. will host “Tools for Transformation: Two Days of Free Training, Resources and Advocacy for Families Raising Children with Autism Spectrum Disorder and Other Developmental Disabilities” beginning at 8 a.m. on two Saturdays, April 14th and 21st in the Challengers Boys & Girls Club facility, 5029 S. Vermont Blvd.
In addition to free training for parents, professionals and community leaders by experts in the field, the two days will offer a free legislative breakfast, more than six hours of free training, a free resource fair, a free legal clinic, free lunch, free childcare, and a free medical update breakfast and transportation stipends for the first 50 families attending.
NOTE: SNN co-founders include Areva Martin, Esq., Martin & Martin LLP (L.A.’s largest African American female-owned law firm), and Donna Ross Jones, president, Transition Music Corporation and featured as one of “50 Most Influential Women” by the Hollywood Reporter.
Cameron: My Personal Experience With Autism
By Queen Unique
She watches him as he sits quiet and content, looking at the television but not watching it. He smiles, he laughs, he looks as if he is in deep thought, but what about? Every few minutes, he flinches and reaches toward her in a failed attempt to annoy her. She’s known him now for twenty-one years. She holds him when he is tired, cares for him when he is ill, and scolds him when he misbehaves. They understand each other although he has only spoken two words in his lifetime. She loves everything about him, except his bad habit of grinding his teeth.
It is almost 6:30 now and she knows he will be hungry again soon. She goes into the kitchen and he follows laughing out loud because he knows it’s time to eat. He has no favorite dish, however, his preference is meat. She learned at a college seminar that people like him usually become obsessed with something. Sometimes it’s books, painting, even building card houses. His obsession was eating. He would devour anything except for cereal. Cameron would get out of bed around 4:00 a.m. and eat all of the food in the refrigerator. It had really gotten out of hand once so they installed a bolt lock on the door. He hated those bolt locks.
He was well behaved for the most part. At least when she was around, he knew what he could and could not do. She also had three other brothers, two younger than Cameron. Throughout his life, his two younger brothers would sometimes pick on him ruthlessly but if someone else did, they became infuriated. She knew that this hurts Cameron’s feelings, he didn’t show it but she could feel it. They all loved him in different ways but for some reason, to her, the way she felt for him was stronger…deeper.
Her kids admired him. They would spend hours in his room playing with him and would be upset if they couldn’t. They understand him and they like to help care for him. It was hard for her to explain Autism to two young girls but it worked out well. She told them that God just makes some people different. Special.
“But, Mommy, why did he make our uncle that way?” She laughs out loud as she thought back. Sometimes the questions that children ask are the most difficult to answer. She glances across the room at Cameron, waiting patiently at the dining room table to be served his meal. Sometimes she asks him what he’s thinking about and he just smiles and signs ‘eat’. He doesn’t use much sign language at home except the sign for ‘eat’. It’s definitely his favorite.
Cameron is about 5’9”, 200 pounds but he is a big baby who loves to ride his 3-wheel bicycle. He likes to curl up in their mother’s lap still at the age of 21. He’s big but gentle and he hates to see any of his family in any type of pain. He would cry uncontrollably sometimes and it hurts them immensely because they never know why. They would offer him his favorite things but nothing stopped his crying until he fell asleep. She used to stand in his doorway and watch him sleep, wondering why he cries that way. Is it because he knows he is different and it was hard to deal with? Is it something happening at school? The thought of someone mistreating him always makes her angry. Lord knows they had been through enough of that with his father. His father. Is that why he cries? Does he miss him or does he hate the memories of his violence?
He looks up and notices her watching him and he smiles again. She loved his smile. Through all the changes the family had been through, one thing that never changed was his smile.
She could remember back when he was only twelve years old. He used to think it was funny to jump out of open windows and run when no one was looking. Sometimes they would hear him crash through the screen, there were even times he would do it while they were in the same room. He would burst the front door open and tear across the field. Boy, he was fast as a bullet too. Their Mom would scream for the two oldest kids to chase him down because she couldn’t catch him, she had tried a few times. He would run like the wind, laughing and never looking back. The family always feared a car would hit him because he ran so carelessly but luckily it never did happen. Their neighbors had grown to know him and they would sometimes hold onto him until they caught up. Cameron would have sand spurs in his feet and he would hold his foot up for his mother to pick them out once he was safe in the house again. She giggled to herself as she prepared to fry his pork loins.
It was as clear as yesterday to her, one Saturday morning at about 3:30 a.m., there was a knock at the door that woke her. When she opened the door, there stood Daryl, one of her older brother’s classmates who lived about four blocks away. She had a huge crush on him and she thought he came to his senses and realized he felt the same way. Her heart fluttered in her chest. He said that he was coming in from the club and he saw Cameron run past his house. Her heart sank, a chill ran down her spine and sheer panic engulfed her as she noticed the time. She ran for her shoes, screaming for everyone to wake up. They all scrambled out of the door and split up into three different directions. She combed her path, calling his name for hours on end. The sun was rising as tears swelled in her eyes and she finally went home. There was Cameron on the couch with his mother picking the sand spurs from his feet. Mother had found him sitting on the back of a parked trailer truck about two miles away from home. He was lost, tired, afraid and of course, hungry. Her Mom said when she found him; he ran to her and hugged her tight all the way home. He wasn’t laughing or smiling. They were all upset when they realized he had ran out but their Mom said when he hugged her, all of her anger melted in his embrace. They were happy to have him home and he was happy to be there. Ever since that morning, he never ran again.
He grabbed her by the arm and she snapped back to reality. She looked at him and he signed ‘eat’. She hurried to prepare his plate and sat it on the table in front of him. He devoured four pork loins and a heap of macaroni and cheese within seven minutes and she just knew he would want more. But he did not want any more today. Cameron rose from the table and went to his room to rest. She would not disturb him because he looked tired. He went into the room and closed the door behind him.
As Cameron closed his door, he sighed out loud. So many thoughts ran through his head. He was full and really wanted to watch television. It did not matter what was on. He needed to put his mind at ease the best way he knew how considering the fact that he could not talk. So his release was television and music. He looked around at his television, headphones, compact disc players, and cassette players they had bought for him. He knew how much his family loved him, especially his Mom and his sister, Katrina.
Katrina was firm but she truly loved him. He knew he could not get away with half of the stuff he could with his mother. His mother was always weak for him because she felt guilty to certain extent. He knew he could have whatever he wanted if he just asked. Sometimes Katrina would try to make her resist but it never worked. He was Mommy’s boy. He laughed to himself.
His two younger brothers were better now. They used to pick on him years ago and his Mom and sister would become defensive. It never bothered him; he knew they were just being children. Though he is autistic, he was much more mature than they thought. But he knew that it made them happy to do everything for him. They liked to wait on him and clean up after him. But whenever he received awards from school for cleaning up and preparing food, they would be surprised. What do they expect? Cameron knew that school was a job and home was like a vacation so he relished in it.
When his sister would stare at him with ‘that look’ he always knew what she was thinking. He would find himself quietly struggling inside to say ‘it’s okay’ but he could only smile. That was his way of telling her that he was just fine. His Mom does the same and when she does it, he struggles even harder to say something but it never happens so he has learned to laugh away the anger. Smiling and laughing always makes him feel better because he knows that it makes them feel better. Whether they know it or not, they really mean the world to him.
Cameron felt uncomfortable and had to switch positions in his king-sized bed as he thought back to the unhappy days. The man that his brothers called Dad. He loved him but his hatred and anger overwhelmed the love that was there. Cameron is always loving and gentle but when someone in his family was hurt, he would see red, literally. ‘Dad’ would make him do just that because he hurt them physically and emotionally. He was relieved when he left although something inside is empty now. Back then he cried because of him and now he cries because of those memories. It would hurt his family when he cried because they didn’t understand why but he could not help himself. Although he is gone, the memories linger. He had heard his sister crying at night sometimes as he lay in his bed. He never knew why she would cry; all he knew is that the next morning, she was all better. So he does the same and it works. It really does work.
Cameron only knew what he was taught and what he saw. It’s hard to be that way but he knew it could be worse. He sees worst-case scenarios each day at school. Some of his classmates can’t walk or feed themselves, some can’t even understand simple English. To make matters worse, some of their families are uncaring and regretful of them. There are even a few that don’t even have their real families. He knew he was blessed to be where he was. He was not too sure who made it possible but he thinks it was that guy who he’s heard his sister talking about. Some guy named God. Whoever He was, Cameron believed that He was the One who blessed him and he was thankful for that.
So as he lay in his bed, dozing off, he smiled again. His door creaked open and he closed his eyes just enough to see but to appear asleep. He was really good at that now. He saw Katrina come in, cover him up and kiss his forehead. She picked up the remote to turn the television off but she paused as she remembered the comfort that it provided for Cameron. She placed the remote back on the dresser and walked to the door. She stopped and looked back just as she always does, then she finally turned and closed the door behind her.
Cameron smiled again.
Copyright © 2007 by K.L. Shanks
(1) Autism Society of America, Defining Autism. Retrieved November 21, 2007, from http://www.autism-society.org/site/Page Server?pagename=about_whatis_home
(2) Child-Autism-Parent_Cafe.Com, African Americans and Autism. Retrieved November 21, 2007, from http://www.child-autism-parent-cafe.com/african-americans-and-autism.htm…
Autism and Race: Parents, Advocated Seek More Prompt Diagnoses of Minority Children
Story By KATHLEEN MEGAN & Photos By CLOE POISSON | The Hartford Courant [CT]
May 14 2007
When Ronnie Bonner Jr. was 21/2, his mother, Corendis Dawson-Bonner, was convinced that he had autism. While her pediatrician said not to worry, Dawson-Bonner was sure that his lack of language development, eye contact and social interests were symptoms of the disease.
“We would have a roomful of kids, and he would be off in his own little corner of the world,” Dawson-Bonner remembers. “He didn’t engage.”
In the next few years, doctors and other professionals would pin a wide array of labels on Ronnie – including developmental delay, attention deficit disorder, hyperactivity and a social and emotional disorder. Even obsessive-compulsive disorder and oppositional defiant disorder were mentioned.
Not until he was 6 was Ronnie finally diagnosed with autism.
Getting the right diagnosis and appropriate treatment has made all the difference, his mother says. Now 12, Ronnie is lively, affectionate and far more communicative. However, Dawson-Bonner can’t help but wonder how much better off he might have been if he had received the right treatment from the age of 2.
“He’s in the seventh grade, and he’s reading at a fourth or a fifth grade level,” she said. Why wasn’t he diagnosed sooner?
That’s a question that might be asked about many African American children with autism, who, according to one study of children on Medicaid, are diagnosed on average about 18 months later than white children. While a year-and-a-half may not seem like a long time, it is in the life of a child with this developmental disorder, which affects normal brain function and impedes social interaction and communication skills.
“It is crucial to identify children with autistic-spectrum disorders as early as possible, as studies have demonstrated that the provision of early, intensive, high-quality intervention services is associated with improved outcomes,” said Dr. Thyde Dumont-Mathieu, a developmental pediatrician at the University of Connecticut with a clinical practice at St. Francis Hospital and Medical Center.
“A toddler diagnosed with autism may qualify for 15 hours of services per week through the state’s Birth to Three program”, Dumont-Mathieu said. “However, if not identified, that same child may not get referred to the program, may receive less intensive services and may not benefit from the behavioral approaches recommended for children with autism-spectrum disorders.”
Indeed, concern is widespread on both national and local levels about whether African American children and other minorities are getting diagnosed early enough or are being misdiagnosed.
“It’s a hugely important issue,” said Marguerite Colston of the Autism Society of America in Bethesda. “We have been crying out for attention to minority families with autism for years.”
Wendy Fournier, president of the National Autism Association based in Nixa, Mo., said the issue is “actually driving us crazy. … I think there are probably a lot of kids with autism in the minority community who are going undiagnosed.”
Fournier said her group is establishing a committee to reach out to minority communities. “At conferences we go to, there are no black people there, no minorities. It’s kind of freaky. It’s very, very noticeable.”
In Hartford, Merva Jackson, executive director of the nonprofit African Caribbean American Parents of Children with Disabilities, said she believes that many African-American children with autism-spectrum disorders are misdiagnosed as having disorders involving defiant, oppositional or behavioral problems.
“I think it’s just a lack of knowledge” on the part of African-American families about what autism is”, said Jackson, “as well as cultural insensitivities or racism on the part of doctors and other professionals who evaluate children.”
In many ways, it is not surprising that there would be disparities and inequalities in the diagnoses and treatment of autism between white and African-American children. Research has shown that there are significant disparities in the quality of health care received by racial minorities compared to those received by non-minorities, even when insurance status and income are comparable. The research results on whether African-American children with autism are diagnosed later than white children has been mixed, but David Mandell’s 2002 study of children on Medicaid is often cited as cause for worry.
Mandell, assistant professor at the University of Pennsylvania School of Medicine, studied children on Medicaid in an attempt to eliminate income as a factor in quality of care. He found that white kids were diagnosed at 6.3 years old, compared with 7.9 years for African American kids. This late age for diagnosis is “not good for anybody,” said Mandell. “It is better if children are diagnosed before age 3 so they can be helped through preschool intervention programs”.
Dumont-Mathieu of St. Francis said that in some cases, children as young as 18 months can be diagnosed. Mandell’s study also showed that African American children were less likely – by 2.6 times – to receive an autism diagnosis on their first visit to a specialty care office and more likely to be misdiagnosed with conduct disorder and adjustment disorder. Dumont-Mathieu emphasized Mandell’s study is not enough to prove definitively whether there are racial disparities in diagnosis of and care for children with autism. However, if such disparities do exist, she said there may be many contributing factors. First, she said, is access, including both distance to an autism specialist and insurance and cost concerns.
Cultural and communication differences can also create difficulties. If a patient comes in, Dumont-Mathieu said, and his mother says he’s not making eye contact and he’s flapping his arms, most pediatricians would probably have “autism flash across the brain.” But if the parent said simply, “I’m worried about his behavior. They might not think autism. They may think Attention Deficit Disorder,” said Dumont-Mathieu.
“I think sometimes that different communities may focus on different symptoms.”
Also, Dumont-Mathieu said, “I think the perception of normal and the set point for `I’m concerned’ may vary culturally,” she said. In some families, a young mother might simply talk to her mother or grandmother about her concerns, rather than approaching a doctor. There may also be some racial stereotyping, Dumont-Mathieu said.
“I know some [parents] have said their child as a black child is more likely to be labeled as having oppositional defiance disorder than as having autism.”
In addition, patterns or trends in behavior may be missed if a child does not see the same pediatrician consistently. Mandell said the expense of treating autism may also act as a disincentive to make that diagnosis. Socioeconomic factors can also be at play: It can be difficult to get to specialists and to get insurance coverage.
Dawson-Bonner believes the delay in her son’s diagnosis was at least partly because she is African American and because of her own socioeconomic background. “I don’t have a degree. My husband doesn’t have a degree,” she said. “I’m from Hartford.” She feels doctors didn’t take her concerns as seriously as they could have. “I think if I’d been a white woman from the suburbs, it would have been completely different. I think they would have been more apt to find out the real thing [diagnosis] rather than `let’s hurry up and label this so we can get on with it.'”
Amy Nelson of Meriden recalls when her son, Daniel, was 3 years old, she was told he was mentally retarded.
“But I questioned that,” said Nelson. “I said I know what mental retardation is, and this wasn’t that.” She refused to accept that diagnosis and eventually – after seeing more doctors – was told that he had autism.
“He had all the classic signs: He would talk to you through his animals; he could tell you everything about dinosaurs. … He had the flapping arms, the spinning… Getting the right diagnosis was like “running a race,” said Nelson. She attended conferences on autism where she often found she was the only black person present. Eventually she started a support group for black and Hispanic families with autistic children in New Britain, but it has since fizzled. Daniel, now 15, attends Maloney High School.
“You have to get yourself educated,” Nelson said of parents. “If you don’t know what certain things are, anybody can slap a label on your child.”
Kathy Megan can be reached at firstname.lastname@example.org.
Copyright 2007, Hartford Courant