Another "Duh" Article

U OF M STUDY FINDS THAT PRIMARY MEDICAL CARE
FOR CHILDREN WITH AUTISM NEEDS IMPROVEMENT

No! Really?! (Sarcasm over now.) I guess it's good that what I find painfully obvious is being researched, as it brings to light yet another failure to kids with Autism, and hopefully those who can help will be aware now.

I remember when I managed to finally get Hutton diagnosed with Autism, three years ago, with absolutely no help from his pediatrician. We'd had his hearing tested six months before. It was fine. His speech was delayed, but the place where we had the speech delay diagnosed (which was actually recommended by the pediatrician) couldn't help us. They didn't even put us on a wait list. I found a speech therapist who could fit Hutton in for (very expensive) therapy, but he still only had a speech delay diagnosis -- not enough to get special services from Early Intervention. I got the name of a neurologist in Tacoma from a friend whose son had been diagnosed with Autism a month earlier. The neurologist didn't have a wait list, unlike the other places that could diagnose a child that were closer than an hour away. They all had wait lists of several months to a year, just to see somebody for a diagnosis. The neurologist didn't really diagnose Autism. He just wrote, "We should assign the diagnosis of Autism at this time." Everyone who read that looked confused, but at least it got Hutton into Early Intervention for a few months.

When we went back to the pediatrician later, he seemed surprised at the diagnosis, but strangely enough, had nothing to offer us at all in terms of help or advice. We've been to several other doctors before finding our current doctor, but I still credit the internet and online support groups for 99% of the help we've managed to find for Hutton.

Hubby and I have drilled the following information into his sister, the pediatrician: Make sure you take any delayed developmental milestones seriously with your patients! Follow up and trust the parents' intuition; don't tell them they're just worried or overly cautious until you've at least done the M-CHAT (Modified Checklist for Autism in Toddlers). Of course, she didn't believe Hutton had Autism even after he was diagnosed! Sheesh.
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NEWS RELEASE

U OF M STUDY FINDS THAT PRIMARY MEDICAL CARE
FOR CHILDREN WITH AUTISM NEEDS IMPROVEMENT

Care Does Not Meet Criteria Set By American Academy of Pediatrics

MINNEAPOLIS / ST. PAUL (April 2, 2007) — Children with autism do not receive the same quality of primary care as children with other special health care needs, according to research from the University of Minnesota Medical School.

A study published in the Archives of Pediatrics and Adolescent Medicine found that parents of children with autism were less likely to report that their children received the type of primary care advocated by the American Academy of Pediatrics (AAP) when compared to parents of children with other special health care needs. The "medical home model," which is defined by the AAP as accessible, continuous, comprehensive, family-centered, compassionate, culturally effective, and coordinated with specialized services was used as a measure for ideal primary care of children.

"This study shows that children with autism are less likely to receive the type of primary medical care that we hope for all children," says principal investigator Allison Brachlow, M.D., research fellow at the Department of Pediatrics. "With increasing numbers of children diagnosed with autism, it is imperative to understand how to provide optimal care for these children."

Specifically, Brachlow found that parents of children with autism were less likely to report their child's care was family-centered, comprehensive, or coordinated. For example, parents of children with autism were less likely to report that their child's primary care provider spent adequate time with them, offered understandable explanations, or discussed outside services, such as speech and occupational therapies. Furthermore, parents of children with autism were more likely to report difficulties obtaining subspecialty care, such as referrals to a gastroenterologist or other subspecialty doctor.

Researchers analyzed data from the National Survey for Children's Health (NSCH) which surveyed 102,353 parents or legal guardians of children under 18 across the nation. Of this number, 495 children were identified as having autism and 18,119 were defined as children with other special health care needs such as asthma, attention deficit disorder, behavioral conduct problems, and depression.

As a disease, autism presents challenges which may contribute to difficulties in providing primary care.

"While there is a recognized genetic component to autism, the cause is still unknown. Additionally, the diagnosis of autism is clinical, meaning there are no blood tests to determine if a patient has autism. Currently, there are many therapies and treatments for autism, each with varying degrees of supporting scientific evidence." Brachlow notes, "Epidemiological research is challenging because children with autism appear to be a heterogeneous group. Further research is needed to determine and implement the best models of primary care delivery for children with complex medical conditions, such as autism."

According to the Autism Society of America, autism is estimated to affect approximately one in every 150 births. This accounts for approximately 1.5 million Americans who have been diagnosed with some form of autism, which varies in its severity. It is expected that the number could reach 4 million within ten years.

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The Academic Health Center is home to the University of Minnesota's six health professional schools and colleges as well as several health-related centers and institutes. Founded in 1851, the University is one of the oldest and largest land grant institutions in the country. The AHC prepares the new health professionals who improve the health of communities, discover and deliver new treatments and cures, and strengthen the health economy.

Contact: Amy Devore, Academic Health Center, 612-626-4784; Sara Buss, Academic Health Center, 612-624-2449

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Oh yeah. April is Autism Awareness Month. I'm sure I'll have lots of posts about Autism this month, since so much is popping up about it now. OPRAH!!! OPRAH has Autism! Well, actually, she just did a show on Autism. But it made big news in the Autism community. I'll try to post my reaction to that later. I know you're dying to read that!