Research Finds Families of Kids with Autism Try Five Simultaneous Treatments on Average

Parents of children with autism spectrum disorder don't try just one thing to help their children: they tackle multiple approaches, research from the Interactive Autism Network shows.

On average, children with autism undergo five simultaneous treatments, according to preliminary data published last month. The data comes from surveys filled out by more than 4,000 families.

As you will note from the list of most common treatments below, researchers define the term "treatment" broadly: it can mean services delivered by educators, therapists and medical prescription; special diet; treatment can also mean social stories, which use pictures and symbols as well as words to tell kids with autism what to expect on a family outing, dentist visit or other situation; social skills groups; and weighted blankets or vests.

The Most Common Approaches

Based on the survey data, the most common treatments are listed below:

1. Speech and language therapy
2. Occupational therapy
3. Applied Behavior Analysis (ABA)
4. Social skills groups
5. Picture Exchange Communication System (PECS)
6. Sensory integration therapy
7. Visual Schedules
8. Physical therapy
9. Social stories
10. Casein-free diet
11. Gluten-free diet
12. Weighted blanket or vest
13. Risperdal
14. Melatonin
15. Probiotics

What the Researchers Notice So Far

The list above accounts for more than half of the treatments that families filling out the surveys list, though researchers emphasize that they have to do a lot more analysis of their data to get a clearer picture of what's going on. See a public notice about the research here.

In fact, trying to get a clearer picture of what's going on is a main thrust of this project. The researchers note:

Hundreds of autism treatments are currently in use. In many cases, there is little or no scientific evidence to support their effectiveness. Parents of children with ASD, driven to help their children and knowing time is of the essence, are unable to wait for answers. They find themselves making all sorts of choices and trying all sorts of remedies, often in the absence of adequate information.

So many parents have gone through this: researching, agonizing, choosing, evaluating, dropping treatments, adding treatments... and trying to find a combination that keeps their child stable, healthy, present, and able to learn and grow. Most would agree that going through this process is a nightmare.

Parents need answers. Too many have participated, unwillingly, in the great autism treatment experiment. By collecting data on families' treatment experiences, IAN hopes to contribute to the effort to identify effective treatments, as well as to guide decision-makers prioritizing which not-yet-proven treatments to study.

That last note suggests that these researchers are seeking to apply some rigor to understanding parents' testimonies about what they see happening with their children—what works and what doesn't—so they can influence research directions in the future.

As for this survey sample, the researchers note that thousands of survey respondents reported that their kids are taking vitamins, minerals and prescription drugs. More specific data about this and other findings are due to be released at an unspecified future date.

Who is the Interactive Autism Network?

The Interactive Autism Network is a web-based project of the Kennedy Krieger Institute, a research and educational organization in Baltimore that specializes in developmental disabilities including autism spectrum disorders. The organization received funding from Autism Speaks, the major nonprofit group, to start the project in January 2006.

American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents

The American Academy of Pediatrics, the national group for 60,000 primary care children's doctors, this week issued a major announcement to educate its members about the early diagnostic signs for autism spectrum disorders, and urge them to look for those signs during baby checkup visits.

This announcement, made at the Academy's annual national conference on Oct. 29, is important because it sets some baseline expectations for what pediatricians around the country should understand about autism, including the essential importance of early intervention services. The documents make clear to doctors (and parents, grandparents and caregivers) the importance of milestones for early childhood development and communications skills. The Academy advises doctors to look for these signs at every well-child visit, or baby checkups. For parents and advocates of young children with autism, the documents also could help set the stage for minimum expectations for early intervention services.

Read the announcement by clicking here. It is impressive in its scope. It includes links to two research studies published in the November 2007 issue of the journal Pediatrics: "Identification and Evaluation of Children with Autism Spectrum Disorders," explains the history of autism, summarizes research so far into possible causes for it, lays out specific criteria for doctors to diagnose autism and explains how to help parents look for developmental delays. The second report, "Management of Children with Autism Spectrum Disorders," establishes the importance of behavioral and educational interventions, including structured teaching methods such as Applied Behavior Analysis (ABA) and Treatment and Education of Autistic and Related Communication Handicapped Children (TEACHH) delivered in low student-teacher ratios "to allow sufficient amounts of 1-on-1 time" for "at least 25 hours per week, 12 months per year."

The Academy said it published both documents as an update and replacement for materials published in 2001.

Diagnostic Signs for Autism Before 18 Months of Age

"Language delays usually prompt parents to raise concerns to their child's pediatrician—usually around 18 months of age," the Academy notes. "However, there are earlier subtle signs that if detected could lead to earlier diagnosis." The signs include:

* not turning when the parent says the baby's name
* not turning to look when the parent points says, "Look at..." and not pointing themselves to show parents an interesting object or event;
* lack of back and forth babbling;
* smiling late; and
* failure to make eye contact with people.

The doctors' group notes:

"Red Flags" that are absolute indications for immediate evaluation include: no babbling or pointing or other gesture by 12 months; no single words by 16 months; no two-word spontaneous phrases by 24 months; and loss of language or social skills at any age. Early intervention can make a huge difference in the child's prognosis. "Autism doesn't go away, but therapy can help the child cope in regular environments," said Dr. Chris Plauche Johnson, a co-author of the reports. "It helps the children want to learn and communicate."

A Heads Up to Doctors About Parents' Use of Alternative Medical Therapies

In addition to developmental checklists, specific guidelines for doctors and explanations of the medical literature about autism and therapies for it, there's an interesting secondary theme the Academy of Pediatrics is working to convey to its members about parents' interest in alternative medical therapies. The message to doctors goes something like this: There's a great deal of media coverage and growing awareness out there about autism spectrum disorders and lots of information on the Internet. Engage parents in discussions, listen to their concerns. Don't dismiss their interest in alternative therapies, even as you share knowledge about evaluating whether a treatment option has evidence to show it is valuable.

Here's a passage from the Academy's announcement:

Pediatricians who treat children with ASDs should recognize that many of their patients will use nonstandard therapies. The report says it’s important for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced information and advice about treatment options, including identifying risks or potential harmful effects. They should avoid becoming defensive or dismissing CAM in ways that convey a lack of sensitivity or concern, but they should also help families to understand how to evaluate scientific evidence and recognize unsubstantiated treatments.

“Many parents are interested in CAM treatments such as various vitamin and mineral supplements, chelation therapy, and diet restrictions. It’s important for pediatricians to maintain open communication and continue to work with these families even if there is disagreement about treatment choices, ” said co-author of the reports Scott M. Myers, MD, FAAP. “At the same time, it’s also important to critically evaluate the scientific evidence of effectiveness and risk of harm and convey this information to the families, just as one should for treatment with medication and for non-medical interventions.”

Although use of the gluten-free/casein-free diet for children with ASDs is popular, there is little evidence to support or refute this intervention. More studies are in progress, and it is anticipated that these studies will provide substantially more useful information regarding the efficacy of the gluten-free/casein-free diet.

All of this information is available for sale ($70 for members, $80 otherwise) in a package for pediatricians called "Autism: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians," including "screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts."

Federal Research Grants Show Intensified Effort to Find Autism Clues, Treatments, NIH Says

The research grants recently announced by the National Institutes of Health (NIH) add up to $66 million over the next five years, and the round of funding -- plus a second round next year -- demonstrates the federal government's commitment to finding causes and new treatments for autism spectrum disorders, according to the agency's program manager for autism research.

"It shows the NIH's commitment to intensify our efforts to find causes and new treatments for autism," said Alice Kau, program manager for autism at the National Institute of Child Health and Human Development, a section of the NIH.

The grants announced Aug. 2 went to six universities around the country; in total, the researchers will receive about $13.3 million per year for the next five years, Kau said in an interview with Autism Bulletin. The NIH soon will begin evaluating another group of grant funding applications and plans to announce another round of research awards in 2008, which will increase the agency's spending on autism research to approximately $24 million annually, she said.

The research awards this year, and in 2008, represent an effort to establish "autism centers of excellence" or "ACEs" and to consolidate two existing research programs, called STAART, or Studies to Advance Autism Research and Treatment, and CPEA, or Collaborative Programs of Excellence in Autism. (See the press release from Aug. 2 here.)

The STAART program established eight research centers around the country: Boston University, Kennedy Krieger Institute, Mt. Sinai Medical School, University of California at Los Angeles, University of North Carolina at Chapel Hill, University of Rochester, University of Washington and Yale University. This website about the STAART program has more background about the research going on at some of these facilities, including outpatient studies that examine relationship building interventions, drug trials and the relationship between behavior and diet in young children.

This website has more information about the CPEA research efforts, including the status of specific research projects (whether peer-reviewed papers have been published yet, for example). These research efforts are exploring a range of issues, including genetic traits of autism and whether there's a causal link between the Measles-Mumps-Rubella vaccine and autism spectrum disorders. The website indicates it was last updated in September 2006.

Of course, the research takes time before it yields results that affect the lives of people with autism and families of those people. Kau said we'll have to wait a while before we see the results of these and other research studies about autism. "It's still very exciting," she said of the latest funding round.

Also see:

* National Institutes of Health Reorganizes Autism Research Program, from Autism Bulletin

* Autism Activities at NIH, federal government website last updated October 2006.

* National Institutes of Health, press release from October 25, 2001, "New Children's Environmental Health Centers to Study Causes of Autism and Other Disorders," link here.