Friday, May 28, 2010

Popular Autism Diet Does Not Demonstrate Behavioral Improvement

This is interesting to me.  We tried the diet for over a month and then just threw it all back in to see if there was any change one way or the other.  Nothing.  I've heard of parents spending a LOT of money on this diet believing that it was working, only to find that years down the road, when their child accidentally ate a large portion of wheat and or dairy, that there wasn't any change in behavior.

ScienceDaily (May 20, 2010) — A popular belief that specific dietary changes can improve the symptoms of children with autism was not supported by a tightly controlled University of Rochester study, which found that eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

The study is the most controlled diet research in autism to date. The researchers took on the difficult yet crucial task of ensuring participants received needed nutrients, as children on gluten-free, casein-free diets may eat inadequate amounts of vitamin D, calcium, iron and high quality protein. Unlike previous studies, they also controlled for other interventions, such as what type of behavioral treatments children received, to ensure all observed changes were due to dietary alterations. Past studies did not control for such factors. And although no improvements were demonstrated, the researchers acknowledged that some subgroups of children, particularly those with significant gastrointestinal (GI) symptoms, might receive some benefit from dietary changes.

"It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn't show significant benefits," said Susan Hyman, M.D., associate professor of Pediatrics at Golisano Children's Hospital at the University of Rochester Medical Center (URMC) and principal investigator of the study which will be presented on May 22 at the International Meeting for Autism Research in Philadelphia. "However, the study didn't include children with significant gastrointestinal disease. It's possible those children and other specific groups might see a benefit."
In response to widespread parent-reported benefits, URMC initiated the trial in 2003 to scientifically evaluate the effects of the gluten-free and casein-free diet, which eliminates wheat, rye, barley and milk proteins. Parent observation has played an important role in earlier treatment discoveries in children with autism, such as melatonin's benefits for sleep.

Hyman's study enrolled 22 children between 2 ½- and 5 ½-years-old. Fourteen children completed the intervention, which was planned for 18 weeks for each family. The families had to strictly adhere to a gluten-free and casein-free diet and participate in early intensive behavioral intervention throughout the study. Children were screened for iron and vitamin D deficiency, milk and wheat allergies and celiac disease. One child was excluded because of a positive test for celiac disease and one was excluded for iron deficiency. Other volunteers who were excluded were unable to adhere to the study requirements. The children's diets were carefully monitored throughout the study to make sure they were getting enough vitamin D, iron, calcium, protein and other nutrients.

After at least four weeks on the strict diet, the children were challenged with either gluten, casein, both or placebo in randomized order. They were given a snack once weekly with either 20 grams of wheat flour, 23 grams of non fat dried milk, both, or neither until every child received each snack three times. The type of snack was given in randomized order and presented so that no one observing -- including the family, child, research staff and therapy team -- knew what it contained. The snacks were carefully engineered to look, taste and feel the same, which was an exercise in innovative cooking. In addition, the nutrition staff worked closely with the families to make a snack that met their child's preferences. Casein was disguised in pudding, yogurt or smoothies and gluten in banana bread, brownies, or cookies depending on the child's food preferences.

Parents, teachers and a research assistant filled out standardized surveys about the child's behavior the day before they received the snack, at two and 24 hours after the snack. (If the child's behavior wasn't usual at the scheduled snack time, the snack would be postponed until the child was back to baseline.) In addition, the parents kept a standard diary of food intake, sleep and bowel habits. Social interaction and language were evaluated through videotaped scoring of a standardized play session with a research assistant.

Following the gluten and casein snacks, study participants had no change in attention, activity, sleep or frequency or quality of bowel habits. Children demonstrated a small increase in social language and interest in interaction after the challenges with gluten or casein on the Ritvo Freeman Real Life Rating Scale; however, it did not reach statistical significance. That means because of the small difference and the small number of participants in the study, the finding may be due to chance alone.

The investigators note that this study was not designed to look at more restrictive diets or the effect of nutritional supplements on behavior. This study was designed to look at the effects of the removal of gluten and casein from the diet of children with autism (without celiac disease) and subsequent effect of challenges with these substances in a group of children getting early intensive behavioral intervention.
Hyman said, "This is really just the tip of the iceberg. There are many possible effects of diet including over- and under-nutrition, on behavior in children with ASD that need to be scientifically investigated so families can make informed decisions about the therapies they choose for their children."

This study was funded by the NIH's National Institutes of Mental Health Studies to Advance Autism Treatment Research and National Center for Research Resources (NCRR).

Story Source:
Adapted from materials provided by University of Rochester Medical Center, via EurekAlert!, a service of AAAS.

Thursday, May 27, 2010

The Vaccine Debate - MMR

This is something my husband and I have been struggling with for a long time now.  Probably one of the hardest decisions we've had to make as parents revolves around this very topic.  Do we continue to vaccinate our children?  The concern over vaccine safety puts parents in a squeeze.  If you vacccinate your child and they develop autism, then you feel like a jerk.  And if you don't vaccinate your child and they end up really sick, damaged, or God forbid, dead because of an illness, then you feel like a jerk.  Either way, unless you vaccinate and your kiddo doesn't end up autistic, you're gonna be a jerk.

So to all my fellow "jerks" out there that are struggling with this, I've been doing some heavy research.  Take it for what you will, as I'm not yet convinced of one side or another, but it is helpful to have both sides of the story before you make a knee "jerk" reaction.  (Sorry, had to put another jerk in there... HA!  Just did it again!)

I can tell you, it wasn't easy telling our pediatrician we were planning on not vaccinating.  Mostly because she has been absolutely amazing with our kids in times of trouble and I adore her.  And of course she asked "Why?" and when I told her she reacted in a way I'd never quite seen from her before.  Usually she's smiley, optimistic, calm but proactive when something is concerning, this time I saw major frustration.  I totally understood why.  She loves our kids, and it was more than obvious to me she was both scared and angry at the anti vaccine campaign that's currently running through the autism community.  And I was welling up as we were discussing it... well, maybe not so much discussing, as she was vigorously pleading her pro vaccination case.  And of course I told her of my "jerk vs. jerk" concerns along with some other studies I had been looking into.  It was then when she recommended this book.

"Autism's False Prophets" by Paul A. Offit MD.  Dr. Offit is the director of the Vaccine Education Center, Chief of Infectious Diseases, and the Henle Professor of Immunologic and Infectious Diseases for Children's Hospital of Pennsylvania.

It's a good book so far.  I'm only about a third of the way through it.  I still have a hard time reading a pro vaccine book written by the man that developed a popular vaccine.  But, if I'm willing to read Jenny McCarthy, who isn't a scientist and is an activist mostly because of circumstantial evidence, then I'd better at least give this man my time.

So far, he's discussed the shady and unethical work of Dr. Andrew Wakefield, who in 1998 published an article in the Lancet papers claiming he found conclusive evidence of a link between the MMR and autism. (As many of you know, Dr. Wakefield lost his license to practice yesterday.)  He was the man that started the MMR scare, and consequently, a wave unvaccinated children worldwide.  The initial evidence he posted seemed to be concerning, but when you look at how the data was gathered, what wasn't considered, how the controls that should have been there weren't, and how much he was paid by a personal injury lawyer to prove MMR caused autism, you can't conclusively buy into his theory.  I'm not saying I totally believe the MMR is safe, it's just that the research he did was not all inclusive and therefore doesn't warrant proof.

This website basically sums up what I've read so far, and includes some studies that claim to prove the MMR is not related.  It's an interesting read.

Cypress - Dispute over service dog.

May 27th - The Cypress School District in Southern CA is refusing to let an autistic boy bring his service dog to school. Please support his mom by sending the superintendent an e-mail here showing your support of this boy's needs.  Together we can hopefully better educate the school district on the benefits of service animals for the disabled.  This mom needs all the help she can get!

View the story here:

Tuesday, May 25, 2010

New Medicaid Services Card Attracts Scam Artists

The Arc sent this out in an e-mail... heads up!

OLYMPIA – A North Central Washington family reported an apparent “phishing” scam by an unidentified telephone caller who asked them for $327 and private financial information in exchange for sending them a new ProviderOne “Blue Card.”

The couple refused, and they later discovered that the toll-free telephone number he had given them was bogus. In the call, he identified himself as “Chris Cassidy, ID No. 582,” and claimed he worked for a private firm hired by the government.

It was the latest in a handful of apparent scam attempts linked to the new Services Cards – a plastic identification card that was mailed to about one million Medicaid and medical assistance clients around the state during April and early May. The cards are part of the launch of ProviderOne, a new Medicaid payment system.

The cards are absolutely free and have no value or personal information recorded on them. Like the plastic ID cards used by private health insurance plans, they merely help providers establish the client’s identity and eligibility for services. No representative of the Medicaid program or the Department of Social and Health Services will call and ask for money or personal financial information in exchange for the cards.

Medicaid officials said clients who receive the cards need to make sure they take the card along with them when they visit their doctor, dentist, clinic or pharmacy. It is also a good idea to write down the new ID number on the front of the card. If they lose their card, their provider can use that number and their date of birth, Social Security Number, or address to verify eligibility.

Clients or providers with questions about the new cards can call the Department at 1-800-562-3022 or they can find more information about the cards on the Internet at

Information about the new cards is also posted on YouTube in a new Department video brochure.  Clients and family members, as well as providers, are invited to view the video at

Monday, May 24, 2010

This is getting expensive. How do we pay for this???

So how much does therapy cost?  A lot.  You'd think that if you had insurance, all or most of your child's therapy sessions would be covered, but it is actually hard to find a company that will.  And if you are fortunate enough to have insurance that covers autism therapy, they probably will only cover the first few month's worth.  Frustrating isn't it?  Along with that, you will most likely need some kind of diagnosis before they'll even think of processing the claim.  So here's some ideas on how to get around this ugliness.

If your child is over the age of three, all your therapy services will be performed at the school and covered by the school district.  You do not need a diagnosis for this - your child will need to qualify based on developmental testing done for free from the district.  You may then choose to find more private therapy beyond that, which you will have to get covered by insurance or pay for.

The state of Washington has a program called Apple Health for Kids.  It is medical coverage through dshs, and they're actually really reasonable on income guidelines.  For example, a family of 3 making $54,000 a year makes a $30 a month payment for insurance that will cover your child's therapy sessions.  And you can use it as a supplement to your own insurance.  See it all here:

Tougher to qualify for is Social Security Disability.  They offer financial and medical support.  The only downside is that they do take a while to process.  Here at:

The ARC of Washington has an endowment trust they care for.  Check it out here:

Many therapy clinics work as not for profit, meaning, they are there as a charitable organization.  Ours offers reduction in fees and hardship applications.  Even though we didn't qualify for the hardship, we were assured to keep up therapy and that they would work with us to make it affordable, and they did until we were able to get better insurance.

Understand also, that just because there is a "suggested" amount of therapy your child needs doesn't mean you can't get creative.  We had options to have therapy every other week with parental training so that we could continue with therapy while they are not there (which is really what they're trying to accomplish anyway).  It is ultimately your decision as to what type and how frequent therapy visits are for your child, and any amount of therapy is beneficial.

If any of you have found other resources you wish to share with the community, please post it in the comments section below and I will put in our local resource page.

Saturday, May 22, 2010

And why are we confused?

After talking with one of my son's therapists yesterday, it really became apparent we have a problem with autism treatment education on all fronts.  Not that I didn't really know that already, but I guess it just made me realize how bad it is and how important it is to get the information out there.  And I hope she won't be upset that I'm using this discussion we had as an example, if she ever reads this, but we discussed the confusion another family she had been working with was experiencing.  And this wonderful woman, my son's therapist, was trying to help this poor mom with it all.  After talking with her about it at great length, I discovered that she (our therapist) didn't really know what these kiddos were supposed to do initially to get proper a diagnosis.  And unfortunately, neither did the child's pediatrician.  This poor mom was sent down to Children's for a basic speech eval, when her child had already had one with the Birth to 3 program, and that was 8 months ago.  Nothing has happened since nor does the parent understand what is supposed to happen from this point on.

I am very much blessed with a pediatrician who is proactive, pro patient, and savvy when it comes to autism and spectrum disorders, but for others, like the mom I just mentioned, don't really know what the process for diagnosis or treatment is or even catch the child's potential for autism (the nurse actually saw it before the doctor did in this case).

What's really important for every parent of a newly diagnosed (or waiting to be diagnosed) child is to understand the immediate need for therapeutic intervention.  No matter what the case, if a child is exhibiting a developmental delay that looks to mimic an autistic disorder, they need to be evaluated as soon as possible.  And that doesn't necessarily mean being evaluated by a specialist at a hospital.  Just by a specialist or clinic that provides therapy.  For children younger than 3, an organization like the Birth to 3 program through the county, and after age 3, the school district.  A developmental delay is a developmental delay, and while having a diagnosis is helpful in understanding how the child "ticks", it is not necessary to get services.  The child needs therapy now and waiting for a clinic to tell you your kid has autism before you get services is a waste of precious time.  Why so many professionals are in the dark on this, I don't know.  Everyone at this point agrees that early intervention is key and intervention before the age of 4, when a child's brain is still rapidly developing, is the most beneficial.

So I urge all parents, if you or your pediatrician are at all suspecting, please do not hesitate to schedule an evaluation for your child.  All it takes is a phone call to get started, and you don't need a physician to grant you permission to do so.  You will have the peace of mind that comes with knowing where your child stands developmentally, and will have given them the gift of early intervention if they indeed qualify.  If you have further questions about this topic, please feel free to post it to the community in the question and answer section below.

Thursday, May 20, 2010

The Resource Hole...

What is the common link between parents of newly diagnosed children with Autism, Austism Spectrum, or PDD-NOS disorders? They're all overwhelmed, heartbroken, and confused. Why us? What's our next step? Who do we see for therapy? What kind of therapy do we need? What does this mean for the future of our child? Will he ever leave home? Why didn't they catch this sooner? How are we going to afford his care? And the list goes on and on and on.

So now what? Your pediatrician, if you are lucky, will help you schedule an appointment with a specialist for the ADOS screening. And then you sit and cool your heels for 6-12 months while you wait for that appointment, tirelessly searching the internet, trying to find a fix, and being bombarded with various different groups who have different ideas of what causes Autism and how best to treat it. Everything from vitamin supplements to treatments you would liken to a form of witchcraft. And so you sit, waiting for that magic ADOS appointment with a specialilst who will answer all your questions and make everything better.


Please don't misunderstand me, they all mean well. These people devote their lives to understanding the cause and effect of Autism. They really, really want to help you, and you really, really want them to. So you go through the test, they give you a score and a packet of information to take full of "valuable resources" that will help you once you get home. Yay! You're moving forward! And then you discover that half the information is either obsolete, or conflicting, and not much of it, if anything, tells you what your next step will be. And so begins the trials of the resource hole. You begin to realize there is no one resource that will get you started in the right direction, tell you what to do when situations change, and hold your hand through the process. You will now have to do some research.

And as you research, your information becomes more conflicting.

The specialist says you need 40 hours of therapy a week. The family resource coordinator with the county says you only need 3 plus parental training. Several resources given to you by the specialist are anti-vaccine advocates. Your pediatrician thinks you are a monster if you chose not to vaccinate, the specialist says they don't really know if vaccines are the cause or not. Some therapists believe pechs are a great way to boost language, some think it hinders it. Some believe your child should be in a specialized class for autistic children, some feel that they need to be in amongst typically developing children. And as your child progresses or regresses, new challenges appear. How do I safeguard my home. How do I get my child swim lessons? What's the best way to handle the dentist chair?

Autism is still so very new to the medical community, and at the rate it is being diagnosed, resources are understandibly limited, and at times, hard to find. But that doesn't mean it is acceptable. And that is why this blog is here. To offer hope, support, and direction to those who are struggling with the challenge autism presents, through local organizations, and a community of parents who have been there, done that, AND been successful.

This blog, in the near future, hopes to provide forums for people to connect and share experiences, best practices, prayer, and insightful commentary regarding common challenges and current events related to cause and treatments of Autism and related disorders. Please feel free to leave a comment or feedback as to what you would like to see available here. God bless you and thank you for joining!

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