Early diagnosis is considered key for autism, but minority children tend to be diagnosed later than white children. Some new work is beginning to try to uncover why – and to raise awareness of the warning signs so more parents know they can seek help even for a toddler.
“The biggest thing I want parents to know is we can do something about it to help your child,” says Dr. Rebecca Landa, autism director at Baltimore’s Kennedy Krieger Institute, who is exploring the barriers that different populations face in getting that help.
Her preliminary research suggests even when diagnosed in toddlerhood, minority youngsters have more severe developmental delays than their white counterparts. She says cultural differences in how parents view developmental milestones, and how they interact with doctors, may play a role.
Consider: Tots tend to point before they talk, but pointing is rude in some cultures and may not be missed by a new parent, Landa says. Or maybe mom’s worried that her son isn’t talking yet but the family matriarch, her grandmother, says don’t worry – Cousin Harry spoke late, too, and he’s fine. Or maybe the pediatrician dismissed the parents’ concern, and they were taught not to question doctors.
It’s possible to detect autism as early as 14 months of age, and the American Academy of Pediatrics recommends that youngsters be screened for it starting at 18 months. While there’s no cure, behavioral and other therapies are thought to work best when started very young.
How Is Autism Diagnosed?
In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:
No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age
*This information has been provided by First Signs, Inc
Yet on average, U.S. children aren’t diagnosed until they’re about 4 1/2 years old, according to government statistics.
And troubling studies show that white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children, says University of Pennsylvania autism expert David Mandell, who led much of that work. Socioeconomics can play a role, if minority families have less access to health care or less education.
But Mandell says the full story is more complex. One of his own studies, for example, found that black children with autism were more likely than whites to get the wrong diagnosis during their first visit with a specialist.
Other studies cited have indicated how parents have reported language, social development, play, and general behavioural problems in about equal proportions as giving rise to their first concerns, although there is some indication that over-activity may be a significant initial sign.
The suggestion is that attention would usefully be directed towards general management difficulties such as the effects of over-activity and poor sleep especially in association with difficulties arising in respect of language, play, or social interaction.
It was also noted that repetitive behaviours characteristic of autism do not appear prominent at 2 or 3 years of age, although where parents did report such behaviours among their relatively able children this did appear to be a significant element in the eventual diagnosis.
The problem is that not all types of repetitive behaviour increase, and the observations in this present study suggested that resistance to change reduced with time …. although this could reflect the way in which the parents are able to adapt to the children’s behaviours and to tolerate rituals, or prepare the child well in advance for any changes.
At Kennedy Krieger, Landa leads a well-known toddler treatment program and decided to look more closely at those youngsters to begin examining the racial and ethnic disparity. She found something startling: Even when autism was detected early, minority children had more severe symptoms than their white counterparts.
By one measure of language development, the minority patients lagged four months behind the white autistic kids, Landa reported in the Journal of Autism and Developmental Disorders.
It was a small study, with 84 participants, just 19 of whom were black, Asian or Hispanic. But the enrolled families all were middle class, Landa said, meaning socioeconomics couldn’t explain the difference.
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One of the study’s participants, Marlo Lemon, ignored family and friends who told her not to worry that her son Matthew, then 14 months, wasn’t babbling. Boys are slower to talk than girls, they said.
“I just knew something was wrong,” recalls Lemon, of Randallstown, Md.
Her pediatrician listened and knew to send the family to a government “early intervention” program that, like in most states, provides free testing and treatment for young children’s developmental delays. Matthew was enrolled in developmental therapy by age 18 months, and was formally diagnosed with autism when he turned 2 and Lemon enrolled him in Kennedy Krieger’s toddler program as well. In many of his therapy classes, Lemon says, Matthew was the only African-American.
DSM-V (DSM-5)
The American Psychiatric Association is currently revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. This change is expected to be finalized by the end of 2012 and put into practice in 2013. For perspective on the proposed changes and what they might mean for you or your loved one, please see a related statement by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D. – here.
Now 7, Matthew still doesn’t speak but Lemon says he is making huge strides, learning letters by tracing them in shaving cream to tap his sensory side, for example, and using a computer-like tablet that “speaks” when he pushes the right buttons. But Lemon quit working full-time so she could shuttle Matthew from therapy to therapy every day.
“I want other minority families to get involved early, be relentless,” says Lemon, who now works part-time counseling families about how to find services early.
For a campaign called “Why wait and see?” Landa is developing videos that show typical and atypical behaviors and plans to ask Maryland pediatricians to show them to parents. Among early warning signs:
– Not responding to their name by 12 months, or pointing to show interest by 14 months.
– Avoiding eye contact, wanting to play alone, not smiling when smiled at.
– Saying few words. Landa says between 18 and 26 months, kids should make short phrases like “my shoe” or “where’s mommy,” and should be adding to their vocabulary weekly.
– Not following simple multi-step commands.
– Not playing pretend.
– Behavioral problems such as flapping their hands or spinning in circles.
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By LAURAN NEERGAARD AP Medical Writer