ROBERT MACNEIL: One issue science considered settled for years won't go away: the parental belief that vaccines cause autism. Public health officials have steadily maintained there is no valid, scientific evidence of such a connection; all epidemiological studies have proved negative. But now, bowing to public opinion, the body that sets priorities in autism research, The Inter Agency Coordinating Committee, has recommended studies to determine whether small subgroups might be more susceptible to environmental exposures, including vaccines.
DR. GERALD FISHBACH: Despite many, many, many epidemiological studies, no evidence that current vaccines in their present form have triggered autism. There are two prevalent things going on here: vaccination and autism. But trying to correlate those two have failed to date.
DR. DAVID AMARAL: So I think it's pretty clear that, in general, vaccines are not the culprit. If you look at children that receive the standard childhood vaccines. If anything those children are at are at slightly less risk of having autism than children that aren't immunized. It's not to say, however, that there is a small subset of children who may be particularly vulnerable to vaccines if the child was ill, if the child had a precondition, like a mitochondrial defect. Vaccinations for those children actually may be the environmental factor that tipped them over the edge of autism. And I think it's -- it is incredibly important still to try and figure out what, if any, vulnerabilities in a small subset of children might make them at risk for having certain vaccinations.
DR. MARTHA HERBERT: I think it's possible that you could have a genetic subgroup. You also might have an immune subgroup. There are a variety of subgroups. But the problem with the population studies is they don't they aren't necessarily designed to have the statistical power to find subgroups like that if the subgroups are small.
DR. DAVID AMARAL: I think more importantly what the whole vaccine issue has done is has opened our eyes again to the idea that the immune system is an important component of autism.
Wednesday, April 20, 2011
MacNeil on Autism Causation
Bill to Repeal Arizona Mandate
The legislature has approved a measure to let out-of-state health insurers sell policies in Arizona's small group and individual markets. They wouldn't have to abide by Arizona's benefit mandates, but would have to follow their own states' mandates. In-state insurers would also have the option of selling policies similar to those sold by out-of-state rivals.
Buyers would have far-greater scope to buy the policies that fit their medical needs and wallets.
"This is about expanding markets," said Republican state Sen. Nancy Barto, who introduced the bill. "A lot of Americans are waiting for good, free-market reforms, and this is one that is going to make a big difference."
Insurance is largely state regulated. Each state, lobbied by medical and patient groups, mandates various benefits that all must pay.
The number of state mandates rises each year. In 2004 there were 1,823, according to the Council for Affordable Health Insurance. Now it's 2,156. Unusual mandates include birthmark removal, athletic trainers and massage therapists. Rhode Island has the most with 69, Idaho the least with 13. Arizona has 33.
"It would overturn mandates in Arizona, and one of the most important for us is the health insurance mandate that provides autism coverage for children," said Dr. Doreen Granpeesheh, executive director of the Center for Autism and Related Disorders.
Twenty-four other states also have autism mandates.
"This bill does not repeal any mandate," replied Dr. Eric Novack, a conservative health care activist. "The goal is to give people a choice."
Dear Friends, I need your help today with an urgent matter. As you may know, a few years ago, the State of Arizona passed a Bill that approved Insurance coverage for the behavioral treatment of Autism. This bill was one of the first passed and it has already changed the lives of numerous families and children. Today, the Arizona House of Reps repealed the Bill. Of course this came as a great shock to our families and we are very concerned that it will also produce a precedent for other States who have or are in the process of passing similar insurance bills.
We are asking everyone we know to contact the Governor of Arizona today (or as soon as possible) to ask that she veto SB 1593.
I know many of you are from other States, but I urge you to help us in this process because I believe this may endanger future bills in other states as well. If you have personal contact with celebrities, government officials or representatives of your state, please ask them for help as well. Your efforts are much appreciated.
The link to the governors website is: www.azgovernor.gov
On this website, there is a section where you can submit comments. Please ask the Governor of Arizona to veto SB 1593. There is also a phone number you can call if you would like direct contact with the Governor’s office.
Autism Speaks has announced a major, intensive two-day TV ad campaign, running April 19-20, that will call on Governor Jan Brewer to veto a misguided bill that would repeal enacted autism insurance reform legislation and force hundreds of Arizona families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments –– even though they already have health insurance coverage.
“Neighbors,” will run nearly 200 times over two days on Phoenix’s network TV affiliate stations – KNXV-TV (ABC), KPHO-TV (CBS), KSAZ-TV (FOX) and KPNX-TV (NBC). The ads juxtapose two families who have a child with autism – one of whom is getting the treatments he needs because his parents’ insurance company covers his therapies, and another who isn’t because his insurer is not required to provide coverage. The ad calls on viewers to call Governor Brewer and urge her to veto the bill.
Nick's Law 2011
Twenty-six states currently have autism related insurance mandates. Representative Mike Brown wants Oklahoma to become number 27. That's why he wrote Nick's Law.
See map of states and current autism insurance mandates.
"We always want to be like the rest of the nation. Lets be at the forefront here and take care of our kids," said Brown.
His original version of Nick's Law called for an insurance mandate that voters would have to approve. It would force insurance companies to cover all autism related therapy, including occupational, speech, physical and behavioral, ABA. But, his bill was not heard in committee and when he tried to get the Speaker of the House Kris Steele to allow a vote on the floor, he refused.
"I know there's strong support for it with most legislators, across the aisle, there's strong support for it. But, the powers that be right now, I'm not speaking for why, it's just not happening," said Brown.
By powers that be, he's talking about Speaker of the House Kris Steele.
"I do not favor this particular proposal," said Steele.
Instead, Steele wants to give his autism bill, that passed two years ago, time to work.
"I really believe we ought to give the pilot program an opportunity to work before we do anything that's going to increase the cost of health insurance for all Oklahomans," said Steele.
Tuesday, April 19, 2011
Autism and Abuse
Police are looking for additional victims after a man employed as an in-home caregiver was arrested for allegedly molesting an autistic child.
Jeremy Shawn Stockton is charged with multiple counts of lewd acts against a child under the age of 14.
Stockton was arrested after the boy came forward with details of the alleged molestation.
The 29-year-old is an employee of Wellspring, a local agency that specializes in behavioral intervention for young children with autism.
Since May 2008, Stockton has worked for Wellspring as an in-home caregiver for developmentally disabled children, according to the LAPD.
He has also been a special education trainee at Ulysses S. Grant High School in Van Nuys.
Although not a YMCA employee, in 2009, he worked among developmentally disabled children at the YMCA facility in La Canada.
The boy was autistic, severely limited in his ability to speak and interact.
The teacher's aide assigned to him said she was in fear one day when he began acting aggressively, a behavior not uncommon in children with autism.
But the boy's parents say the aide was the aggressive one, picking up a chair, acting like a lion tamer as the boy cowered in fear. Finally, the parents say, the aide threw the chair at the boy, striking him in the legs.
The case highlights the challenges faced by those who care for some of the most vulnerable students in public schools. An attorney for then-teacher's aide Talia Sabo said she was acting in self-defense against the teenager, who was a student at Monarch High School in Coconut Creek at the time of the May 2008 incident.
"He was being very aggressive," said the lawyer, Maidenly Macaluso. She said the chair fell out of Sabo's hand and was not thrown.
More than 3,000 children diagnosed with some form of autism are enrolled in Broward's public schools. In Palm Beach, the figure is 1,850. Those who are high-functioning display symptoms that might go unnoticed by a casual observer. Low-functioning students struggle with basic communication and socialization skills....The lawsuit was settled last year, with the school district agreeing to pay $25,000. But a guardian ad-litem for the boy determined in December that the settlement, which included attorney's fees, was not in the boy's best interest.
"I think $25,000 is far too low" to compensate the boy for what he allegedly suffered, said the guardian, Matthew Scott, in a federal court filing.
The case was reopened and is pending in federal court. School officials declined to discuss an open case.
Monday, April 18, 2011
MacNeil on Increasing Numbers
Watch the full episode. See more PBS NewsHour.
RICHARD GRINKER, George Washington University: It's where somebody who previously had the identical symptoms now is conceptualized differently. And so, if you went back 30, 40 years, and you looked at people who were diagnosed with mental retardation or who were diagnosed with what was then called childhood schizophrenia, you would find that those people, 30 years ago, would qualify for the diagnosis of autism today. And I suspect that we may see the prevalence of autism continue to increase, not because there are more cases. They were there all along, perhaps, but because we're getting better at locating them, finding them and delivering services to these children and adults who really need help.
ROBERT MACNEIL: But a majority of the researchers we talked to believe that wider diagnosis explains only part of the increase in autism numbers. The rest remains the object of much scientific speculation. Among others, Dr. Irva Hertz-Picciotto, who heads the Division of Environmental and Occupational Health at UC-Davis, sees many possible environmental factors.
IRVA HERTZ-PICCIOTTO, University of California, Davis: There is a group that did look at the diagnostic substitution explanation. They thought that maybe explained a quarter to a third. But in addition to that, there has probably been an environmental contribution for a long time. We, in fact, know that some of the potential environmental causes do include, for example, infectious agents.
ROBERT MACNEIL: Do you have candidate factors for those factors that may be fresh in the environment?
IRVA HERTZ-PICCOTTO: I have a lot of candidate factors, actually. And they include nutritional factors, infectious agents, chemicals in our environment, including chemicals in the household products that we use every day. There are a variety of factors that could be influencing development, and they may play a role at different points in development. But I think multiple factors contribute not just across the population but within any one individual. So when I say that I think autism is multifactorial in its causation, I think that applies to even at the individual level so that it might take two or three susceptibility genes combined with two or three environmental factors at critical junctures.
ROBERT MACNEIL: Which might explain why individuals with autism are so different, even though they share some obvious symptoms.
IRVA HERTZ -PICCOTTO: Exactly. Exactly.
RICHARD GRINKER: And I say, "OK, there's this big prevalence increase in autism. That's undeniable. There's a prevalence increase." Whether it means that there's an increase in the real number of people with autism or not, there's a prevalence increase. But I see it as progress. I really see it as an achievement to be able to identify these kids who previously were either misdiagnosed or maybe had no diagnosis at all.
Sunday, April 17, 2011
The MacNeil Reports Begin
Watch the full episode. See more PBS NewsHour.
The segment focuses on his ASD grandson. At one point, he has a heartbreaking conversation with his 10-year-old granddaughter:
NEELY: I just don't like how autism affects the family. It just - it seems like it takes up too much time, and you usually get really bored of autism, because it's in your life all the time.
ROBERT MACNEIL: What things would you do if you didn't have a brother with autism?
NEELY: It just seems that a lot of money is spent on Nick's vitamins and Nick's doctors' appointments and Nick's everything, and it would change if we didn't have to get all that stuff.
ROBERT MACNEIL: I see. Are you worried about Nick?
NEELY: Yes.
ROBERT MACNEIL: Tell me what you're worried about, about him.
NEELY: Well, if he's going to stay autistic for the rest of his life.
ROBERT MACNEIL: Yes. And what would that mean, if he were?
NEELY: I don't know. It would get harder when he gets older, and there wouldn't be as much services to help him. Sometimes I worry that he might get lost because he doesn't really know what to do.
ROBERT MACNEIL: When you think about the future with Nick, what do you feel about that?
NEELY: Well, I hope that I -- I hope that he doesn't have to stay with me, kind of, and that I hope that he gets healed soon. Sometimes when other people, they -- their lives seem perfect, and when yours -- when yours -- you have to do something that you don't like, you don't usually want to do it, and though your autistic sibling does, and it seems unfair. And it seems like they get what they want and you don't.
ROBERT MACNEIL: Well, one of the things about life is that we all learn we have to do things we don't want to do, whether there's autism around or not.
NEELY: Yes, but it seems like it happens too much. I mean, there's going to be a few times when that happens, but it seems with an autistic brother or sister, it always happens.
Saturday, April 16, 2011
Autism and Budget Politics
It’s a vision that says up to 50 million Americans have to lose their health insurance in order for us to reduce the deficit. Who are these 50 million Americans? Many are somebody’s grandparents -- may be one of yours -- who wouldn’t be able to afford nursing home care without Medicaid. Many are poor children. Some are middle-class families who have children with autism or Down’s syndrome. Some of these kids with disabilities are -- the disabilities are so severe that they require 24-hour care. These are the Americans we’d be telling to fend for themselves.
It’s anyone’s guess as to how states would react in 10 years to Ryan’s proposal. The same goes for how states will cope with rising health costs. The administration’s 15 million figure is speculation, and so are Obama’s claims that "poor children," "children with autism" or "kids with disabilities" would be left "to fend for themselves." The Ryan plan in no way says that states don’t have to cover such individuals. Instead it says that states would have "freedom and flexibility to tailor a Medicaid program that fits the needs of their unique populations."
Friday, April 15, 2011
Thursday, April 14, 2011
The Autism Baby Boom
"We estimate there are going to be half a million children with autism in the next 10 years who will become adults,” said Peter Bell, executive vice president for programs and services of the advocacy group Autism Speaks.At About.com, OAR President Peter Gerhardt writes on policy responses:Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.
“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”
...
Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.
“If an individual needs 24-hour services, the staffing ratio is one to one,” said Charlie Lakin, who heads the Research and Training Center on Community Living at the University of Minnesota. “That means fewer people will get served, resulting in long waiting lists for other families.” Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin.
...
Among the most powerful advocates are siblings of those with developmental disabilities. “Sibs have always played a really important role; we just haven’t identified them as sibs,” Mr. Lakin said. “We’ve identified them as agency leaders and social workers occupationally. But the real impulse of their work is that they were a sibling.”
Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”
• There exists a significant need to further identify and research potential evidence-based, and socially valid, interventions for adolescents and adults with autism in the community. While interventions based upon the principles of applied behavior analysis have the most research, much more is necessary given the current emphasis on life in the community.
• Adult outcomes indicate that transition plans developed under the Individuals with Disabilities Education Act of 2004 (IDEA) for individuals with ASD fail to comply with the transition requirements contained therein such that individuals with autism are generally not provided with the skills necessary to successfully move from school to post-secondary education, integrated employment (including supported employment), adult services, independent living, or community participation (emphasis added). Not only does this need to change but the fiscal resources necessary to support such change are, potentially, available, under IDEA.
• Within the developmental disabilities adult system more effective strategies of staff recruitment, training, and retention need to be developed and implemented on a consistent basis to ensure both better-trained staff and more consistent programs and supports for adults with ASD.
• While continuing the necessary focus on biomedical, genetic, and/or etiological research, an addition emphasis on research addressing "quality-of-life" and related intervention variables for adults with ASD needs to be actively implemented and the results disseminated in such a way to accessible to both families and professional staff.
• Efforts need to be undertaken to shift at least some of the focus of current public awareness efforts away from emphasizing the deficits and challenges associated with living with ASD to include attention to the strengths and competencies of individuals on the spectrum and the benefits of their active inclusion in adult life in the community.
The Thorsen Case
A scientist in Denmark has been indicted by a federal grand jury in Atlanta for allegedly stealing $1 million in grant money that the Centers for Disease Control and Prevention had earmarked for autism research.
U.S. prosecutors on Wednesday said they are seeking to extradite Poul Thorsen, 49, accused of wire fraud and money laundering.
He used the stolen money to buy a home in Atlanta, a Harley Davidson motorcycle and two cars, prosecutors said.
"Grant money for disease research is a precious commodity," said Sally Yates, U.S. attorney for the Northern District of Georgia, in a news release.
"When grant funds are stolen, we lose not only the money, but also the opportunity to better understand and cure debilitating diseases."
Thorsen, a visiting scientist at the Atlanta-based CDC in the 1990s, helped two government agencies in Denmark obtain $11 million in research grants.
He moved back to Denmark in 2002 to be principal investigator for the program. Prosecutors said he was also in charge of administering the research dollars, earmarked in part to study the relationship between autism and exposure to vaccines.
The Age of Autism has a series of links, arguing that the case undermines research showing no connection between autism and vaccines.
Wednesday, April 13, 2011
Ohio Autism Scholarship Program
A post last fall noted mixed reviews for Ohio's Autism Scholarship Program. Also see comments from the Autism Society of Ohio. For a recent positive view, see a release from School Choice Ohio:
April is Autism Awareness Month, and Ohio's Autism Scholarship Program has become a vital tool for families with a child who has been diagnosed with the disorder. The program allows parents who are not satisfied in their child's traditional educational setting to gain access to private educational options.
"The Autism Scholarship Program provides great resources for families of students with autism," said School Choice Ohio Executive Director Chad Aldis. "It is a life saver for parents struggling with the challenges of their autistic children in Ohio's educational system."
"The Autism Scholarship improved my life by helping me to communicate more, express my emotions, have better confidence in myself, and be a more active person in my job and community," said Kevin Carr, an Autism Scholarship recipient.
Currently, more than 1,600 students participate in the scholarship program, and there is no limit to the number of students who can apply.
The Autism Scholarship Program was created in 2003 to provide parents an opportunity to enroll their child with Autism in private education programs that provide specialized instruction from certified teachers and focus on the child's social and academic needs. Scholarships are worth up to $20,000 per student per year.
The Autism Scholarship is often used by parents to gain access to early intervention services and can be used for individualized programs that may include several components, such as speech therapy, social skill development, and behavioral therapy.
Autism is a complex neurobiological disorder that involves impairments in communication, social and behavioral domains, and these symptoms can range from very mild to severe. It is a lifelong disease that crosses all racial, ethnic, and social lines.
While the Autism Scholarship Program is a great resource for students living with the disorder, no such program currently exists to give children with other disabilities in the state the same educational choices. A program is being debated now in the Ohio General Assembly that would provide improved educational opportunities for children with special needs. Contact School Choice Ohio at 614-223-1555 to find out what this proposed legislation could mean for children with disabilities in our communities.
For more information about the Autism Scholarship Program and a list of participating private providers, visit www.scohio.org.
Tuesday, April 12, 2011
ABA: The Good, the Bad, the Contentious
Today, autism in children has become more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined, according to a national autism organization, and TRICARE now covers Applied Behavior Analysis therapy to treat eligible beneficiaries.
Autism Speaks, a national autism science and advocacy organization, defines autism as "a group of complex developmental brain disorders." Today, about one in every 110 children is diagnosed with autism.
April is Autism Awareness Month, a month that's been observed by the Autism Society since the 1970s, according to their website. Autism Awareness Month highlights the growing need for concern about autism and its potential treatments.
Many different types of treatment exist for an autistic individual. However, one of the more prominent techniques that has gained status recently is ABA therapy. According to the National Institute of Child Health and Human Development, ABA may help reduce problem behaviors associated with autism and teach vital new skills.
As part of the growing recognition of ABA therapy, TRICARE now covers this type of treatment for eligible beneficiaries. It's part of TRICARE's Autism Services Demonstration, an enhanced benefit under the ECHO program. ECHO - or Extended Care Health Option - is TRICARE's benefit for individuals with disabilities.
With autism legislation blocked three years in a row at the state Capital, Eric Littleton said he is interviewing for jobs out of state and will be leaving Oklahoma as soon as he can find work.
“The policies that are currently being promoted do not reflect the values or the faith that the people of Oklahoma embrace, and I continue to cry out to my brothers and sisters to speak out on this unbiblical status quo,” Littleton said.A series of reforms were passed in 2009 geared to help children with autism. Sooner Success is a program that trains primary care physicians and pediatricians to be specialists in diagnosing autism from birth to age 3. Twenty Oklahoma doctors are specialized in diagnosing autism, he said.
Solomon Littleton was 5 years old in 2008 when he contracted the rare neurological disease Landau-Kleffner syndrome. Eric and Marci Littleton saw their son’s normal life deteriorate with a loss of motor skills. Soon Solomon could no longer feed himself, toilet or dress himself. His behavior became erratic as he would slam his body into walls at home.
House Bill 1248 by state Rep. Randy Grau, R-Edmond, was intended to include children with autism spectrum disorders in the state’s high risk insurance pool. The bill was killed in March by the Appropriations and Budget Committee. The high risk pool was created by the Legislature in 1995 to serve those who have been denied health insurance due to a serious health condition.
House Speaker Kris Steele, R-Shawnee, said he wants to delay consideration of Grau’s bill pending evaluation of a new Sooner Start program that is based on Senate Bill 135. SB 135 went into effect in January. It was authored by Steele and state Sen. Ron Justice.
Eric Larsson, a Minneapolis psychologist and leading advocate, says ABA is more than just a treatment -- it's a way to rescue children "from the ravages of autism." He tells parents that nearly half of children can recover if they start ABA soon enough. "They're coming to us because they want to cure their child," he said. "Just like you or I would do if we had cancer."
But other autism experts say the benefits of ABA treatment have been blown out of proportion. They say there is scarce evidence that it's really better than less costly alternatives.
"A lot of claims out there are inflated," said Barbara Luskin, a psychologist with the Autism Society of Minnesota. "Autism is a difference in the way your brain is. You're not going to cure it."
This year, for the third year in a row, the Minnesota Legislature is debating whether to require the state's health insurance plans to cover ABA treatment for autism, a speech and behavior disorder that is said to affect 1 in 110 children nationally.
More than 20 states have adopted such mandates since 2007, says Lorri Unumb of Autism Speaks, a national advocacy group. Ultimately, she hopes it will become the law of the land as part of national health reform.
"There is no controversy at all about whether ABA is the gold-standard treatment," says Unumb, a lawyer and senior policy adviser. "The only discussion is whether we can afford it."
But among medical experts, there is no consensus that ABA is necessarily the best, says Dr. James Moore, an autism specialist at Children's Hospitals and Clinics of Minnesota.
"If we all believed it, then we wouldn't recommend anything else," Moore said.
In Minnesota, health plans typically pay for certain types of autism treatment, such as speech and occupational therapy. But most draw the line at ABA, calling it costly and unproven.
"The concern is that you've got desperate parents," said Glenn Andis, a psychologist and senior vice president of Medica Health Plans, which opposes the mandate. "You've got a provider who says they've got all the answers, and they're going to cure their kids? Need I say more?"
Monday, April 11, 2011
Diagnosis Gap Narrow -- But Does Not Close
Study: Socioeconomics Playing Reduced Role in Autism Diagnoses
But Poor Children From Low-Income Neighborhoods are Still UnderdiagnosedWASHINGTON, DC, April 6, 2011 — While there is an increasing equality in terms of the likelihood that children from communities and families across the socioeconomic spectrum will be diagnosed with autism, a new study finds that such factors still influence the chance of an autism diagnosis, though to a much lesser extent than they did at the height of rising prevalence.
“As knowledge has spread about autism, information is now more evenly distributed across different kinds of communities,” said Peter S. Bearman, the Cole Professor of the Social Sciences at Columbia University and the Director of the Paul F. Lazarsfeld Center for the Social Sciences, who coauthored the study, which appears in the April issue of the American Sociological Review. “It is also easier to find someone who can diagnose autism, so we no longer see these huge differences in rates of diagnosis. However, it appears that poor kids living in poor neighborhoods still are not being diagnosed.”
The study examines birth and diagnostic records for all children born in California between 1992 and 2000 in conjunction with individual and community-level data such as parental wealth, parental education, and neighborhood property value. All children were followed from the time of birth until June 2006 to allow ample time for diagnosis. As the disorder became increasingly well-known, the average age of autism diagnosis fell from 5.9 among those children born in 1992 to 3.8 for those born in 2000.
“At the height of rising prevalence, which involved children born between 1992 and 1995, kids whose parents had fewer economic resources simply weren’t diagnosed as often as wealthier children— wealthier kids were 20 to 40% more likely than poorer children to be diagnosed,” said study coauthor Marissa D. King, an assistant professor of Organizational Behavior at Yale University’s School of Management “Among children born in 2000, however, parental wealth alone had no effect on the likelihood that a child would be diagnosed.”
Overall, of the 4,906,926 million children born in California between 1992 and 2000, 18,731 or .38% were diagnosed with autism. The prevalence of autism among the 1992 through 2000 California birth cohorts increased significantly, from 29 per 10,000 in 1992 to 49 per 10,000 in 2000.
“I think what has happened in California is that the ascertainment machinery—a combination of diffusion of information, awareness, conversations, and the capacity of physicians, teachers, nursery school providers, nurses, and so on—has become more established,” Bearman said. “And, as more and more people are diagnosed with autism and the disorder becomes more central to thinking about child development in everyday discourse, the information about who might have autism is more evenly distributed across the whole state no matter where people live. So, the differences across communities and by social class are less than they used to be.”
But, Bearman said, it is still the case that children from low-income families who live in poor neighborhoods are less likely to be diagnosed with autism. “We know that parents talking to each other about navigating the service system and talking to each other about how to understand developmental dynamics are really strongly associated with increased autism diagnoses,” Bearman said. “The guess is that in wealthier neighborhoods, there are more opportunities for parents to be talking to each other at parks, schools, and other focal points.”
According to the study, on average among children born between 1992 and 2000, a child from a poor family that lived in a more affluent neighborhood was close to 250% more likely than a child from an equally disadvantaged family living in a poorer neighborhood to be diagnosed with autism.
The study also found that when autism cases were split by severity, a striking pattern was revealed—less severe cases were disproportionately found in wealthier and more educated neighborhoods. Among kids born in 1992, the odds of children with less-severe symptoms being diagnosed was 90% higher if they lived in a wealthy neighborhood. By the end of the study, that percentage had decreased by half, to 45%.
“Less severe cases, the kids who are the highest functioning, can often slip underneath the diagnostic radar in less affluent communities where the diagnostic resources are not as established,” Bearman said. “If you’re less severe, you might not be diagnosed because you don’t seem to have a profound disability—so you’re just thought to be a weird kid.”
As for policy implications of the study, Bearman said it is very simple. “I think you would like to reduce health disparities,” he said. “So, in order to reduce the health disparity—or really the service disparity—we would need to allocate more resources to increase ascertainment to get children into treatment.”
While the study focuses on children from California, the authors expect somewhat more amplified socioeconomic effects on autism diagnoses in other parts of the United States. “Since California has a state-wide program dedicated to serving kids with developmental disorders, it is likely that the inequalities in autism diagnoses are greater in other states,” King said.
###