Autism Speaks Official Blog

This blog is provided for informational purposes. Autism Speaks is not affiliated with FAIR Health nor are we offering an endorsement of their services.

Parents and caregivers of children with autism know only too well the difficulty of predicting the need for healthcare services and high cost of providing this care for autism treatment and related health issues. Planning for medical expenses in advance can help relieve some of the stress and allow you to focus on getting your child the care he or she needs.

A new, independent not-for-profit can help shed light on what has often been considered a “black box” of healthcare costs and help families to better prepare to manage expenses. FAIR Health, whose mission is to bring transparency to healthcare costs and health insurance information, offers a variety of free online services. Now families can look up the cost of healthcare services on the consumer website, www.fairhealthconsumer.org. The FH Consumer Cost Lookup on the site is based on a database of billions of billed medical and dental services.

The FH Consumer Cost Lookup includes medical and dental cost data for every area in the United States. Families or caregivers of children with autism can use the service to estimate what they may be charged along with estimates of what their insurers might reimburse for out-of-network services. Now it is possible to estimate how much you will have to spend before you decide whether to go outside your insurer’s network for a medical or dental service.

For example, several tests and procedures must be performed before a diagnosis of autism can be determined. One very common diagnostic procedure is a developmental behavioral screening ‒ CPT code 96110. A family in Los Angeles with a child undergoing screening for autism can use the FH Consumer Cost Lookup to find out the potential cost of this procedure by entering the zip code for the area where the procedure will be performed and the CPT code (or name of the procedure), as illustrated in the screen shot below.

In the next screen, an estimate of the total charges is shown, with a breakdown of the estimated reimbursement and out-of-pocket costs. For a developmental behavioral screening provided in Los Angeles, it is estimated that the provider will charge $124.99. If the procedure is covered by insurance at a 70 percent rate and is performed by an out-of-network provider, the estimated out-of-pocket cost to the consumer is $37.50.

If you know the terms of your insurer’s plan, you can use the FH Consumer Cost Lookup to obtain an estimate of what you may be responsible for paying for medical services from an out-of-network provider. While this estimate is based on FAIR Health’s extensive data on the fees that providers in your area bill for healthcare services, a variety of other factors, such as deductibles or copays, may influence the exact amount that you will have to pay for services received out-of-network.

The website features an easy-to-use slider tool that allows you to personalize the cost estimate by adjusting the level of reimbursement based on the provisions of your health insurance plan.

The website also offers clear, unbiased educational articles and videos about healthcare insurance. For instance, the educational series, “Reimbursement 101,” can help consumers better understand healthcare insurance and the many variables that affect reimbursement.

3-D technology helps autistic kids learn to read (Orlando Sentinel)
A menagerie of virtual 3-D animals that swim, eat bugs and fly are building crucial reading skills in autistic children at Audubon Park Elementary in Orlando. Read more.

Autism advocates give learning plan failing grade (Canada)
The provincial Education Department’s latest plan falls short when it comes to supporting autistic students, advocates of people with the developmental disorder say. Read more.

Editorial: Autism law requires remedy to meet original intention (Herald Dispatch)
West Virginia’s new law extending health care coverage to children with autism didn’t turn out exactly as billed, and advocates for that new coverage are now seeking a fix. Read more.

Local Artists Among Developmental Disabilities Institute Art Exhibit (Three Village Patch)
To commemorate 50 years of service, the Developmental Disabilities Institute will present an art gallery with work from people with autism and other developmental disabilities – including some from the Three Village community – on Thursday. Read more.

Birthday Parties Can Be a Real Zoo (Northbrook Patch)
My son’s birthday is coming soon. Which means we have been thinking a lot about birthday parties. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Guest post by neurobiologist Pat Levitt, Ph.D., of the University of Southern California’s Keck School of Medicine, in Los Angeles

Many children with autism spectrum disorders (ASD) have co-occurring medical conditions that affect their quality of life and response to therapy. One of the most common of these medical conditions is gastrointestinal (GI) disorder. Our research directly examines the relationship between the two and creates a foundation for understanding the biology and behaviors unique to children affected by both disorders. It is described, in detail, in our recent report in the journal Autism Research.

Our multi-disciplinary research group included neuroscientists, a clinical psychologist, a pediatrician and a pediatric gastroenterologist. We enrolled 121 children through Vanderbilt University, in Nashville, primarily through Vanderbilt’s autism clinic, which is part of the Autism Speaks Autism Treatment Network (ATN). These children fell into one of three groups: those with ASD and GI disorder, those with ASD only and those with GI disorder only. Their parents completed a dietary journal and questionnaires about the children’s behavior and GI symptoms. In addition, a pediatric gastroenterologist evaluated the children with GI disorders.

We found very high agreement – more than 90 percent – between parent reports of GI symptoms and the gastroenterologist’s evaluations. While the specific description of the GI condition sometimes varied between parent and physician, these findings suggest that contrary to what some people think, parents do not over-report GI conditions in their children. Also contrary to some popular thought, the children’s diet and medications did not significantly contribute to their GI distress.

Overall constipation was the most common GI diagnosis. It occurred in 85 percent of children with both autism and GI disorder and was most likely to occur in children who were younger, nonverbal and/or had significant social difficulties. In fact, we found a six-fold increase in communication disturbances in the group of children who had both ASD and GI disorder, compared to children with ASD only.

This strong association between constipation and language impairment has the support of a previous study showing a unique genetic association between children with ASD and GI disorder. As such, our findings further highlight the need for healthcare providers to be vigilant in detecting and treating GI symptoms in children on the spectrum. This is particularly important in the care of nonverbal children who can’t describe their distress. Our research also provides a strong foundation for further research on the causes and treatment of autism associated with GI disorder. We need to know more about how these co-occurring conditions affect the mental and physical health of so many children and adults.

Read more autism research news and perspective on the science page.

Revised Autism Definition Too Important to Rush Into Print: View (Bloomberg)
When is a person just a little different, and when is his peculiarity a symptom of a disabling disorder? Read more.

Parents of autistic children hope to win coverage for care (Livingston Daily)
Justin and Amie Giersdorf’s plans for a second child were all but dashed in July when their son was diagnosed with autism — a disability they learned could cost them upward of $30,000 annually to have treated. Read more.

Autistic man struggles in Iowa’s mental health system (Des Moines Register)
Nobody in Iowa has a place for Jeff Paprocki. Since early October, Paprocki has been locked behind two sets of heavy wood and steel doors at a Des Moines hospital’s psychiatric ward. He hasn’t been outside a single time. He receives little therapy for his serious autism. He sees his family only every other Sunday, when they make the two-hour drive from Waterloo. Read more.

Autistic kids pad their knowledge (Gazette Times)
Debra Redpath’s students in the Communications classroom at Liberty Elementary School have a new tool to process everything from math facts to conversation skills: 13 iPads, one for each student. Read more.

Babies born with either parent over 35 ‘at autism risk’ (Deccan Herald)
Here’s an advice for young couples — make sure you don’t delay your progeny too much, for a study says that babies born with either parent over the age of 35 are a higher risk of suffering from autism. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

Should I even be surprised? College has taught me many things; how to self-advocate, how to spread awareness, and maybe most importantly that if you have a passion for something you need to go for it no matter the costs. At the same time what college also unfortunately taught me was that there are still a great deal of ignorant people out there that simply think of the black and white and avoid the grey completely.

One problem that I see as a huge indicator of this is the whole concept of “out growing” your autism. When I was first diagnosed my psychiatrist told my parents that autism was a life long diagnosis while at the same time other doctors told them there was a possibility that certain individuals would out grow the symptoms that led to the diagnosis.

I think the whole belief of this puts negative annotations toward our community. Saying someone has out grown means someone can be inclined to say someone was cured of something naturally and diminishes the need for legislation reform and funding. In either case I think we need to avoid those debates as they just cause clutter overall.

I feel more and more that I fall in the ever-growing “Grey” section of people. Sure, I graduated from college and am in graduate school but I’ve had two decades of multiple therapies and learned over time to take care and progress within myself. I’m also clearly not the typical “normal” that some people look for. I have eccentric tendencies that make me unique.

My question for those reading is, “What do you think is unique about autism that makes the understanding of individuality important?”

Let me know if you have any thoughts! Thanks everyone!

I just started a new video blog called “My Autism My Voice,” and this is one of the topics I discuss. This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Facebook page here.

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

Sunday February 5th marks the date of football’s biggest night – the National Football League’s 46th Superbowl! The New York Giants face off against the New England Patriots in a rematch of the 2010 Superbowl! Last time the Giants came out on top! Can they do it again? Only time will tell!

Sebree Baltimore – “I don’t know who made this, but found it and thought it to be a great way to add to the celebration.”

Kacie Lynne Campbell: “Last year’s Superbowl. My daughter is draped in our Packers towel because she didn’t have a jersey. My son, who has austism, is a big Clay Matthews fan. It was an awesome day in the Campbell/Esparza household!”

Richie Maldonado: “Little G-Man…Let’s GO Giants! :)”

Jamie Milward: “This was taken in October of 2008, supporting our teams for Halloween! It wasn’t SuperBowl but we ended up wearing the same thing during the Superbowl game that season! lol”

Kelly Rodriguez Andrus: “Go Patriots! (This is our son Bradley’s war cry face!)”

Older parents more likely to have an autistic child, study finds (Fox News)
Children born to a parent over age 35 are at greater risk for developing an autism spectrum disorder — but the risk is the same whether just one or both parents are older, according to a new study of Danish families. Read more.

Proposed Changes to Sharon Autism Program Concern Parents (Sharon Patch)
Fourteen Sharon families with autistic children say proposed changes to one program would lead to additional costs for services to students and staff. Read more.

Grand Valley State University seeks to help students with autism transition into the workforce (M Live)
For the thousands of students from throughout Michigan who have autism, transitioning from school to the workforce can be a challenge. Read more.

Painting designed in Braselton will be U.N. stamp (Barrow Journal)
The design is simple, but the intricate stories behind a piece of artwork created in Braselton include the heartbreaking and the uplifting. Read more.

This week’s “Got Questions” answer comes from pediatric psychiatrist Joseph Horrigan, M.D., Autism Speaks assistant vice president, head of medical research.

Vitamin and mineral deficiencies are common among those with autism, and in many cases, they relate to overly restricted eating habits. This is understandable as autism spectrum disorders (ASD) are commonly associated with gastrointestinal problems and sensory issues with food textures and smells. It is also possible that the underlying biology of autism may cause deficiencies in the digestion of certain foods, which could affect vitamin intake. For example, a recent study documented that some children with autism and gastrointestinal disturbances have impaired carbohydrate digestion.

Normal growth and good health depend on the body absorbing and metabolizing the vitamins and minerals that are part of a well-rounded diet. In addition, studies have identified several examples of nutrient deficiencies affecting thinking and behavior – for example, the ability to focus or stay alert in school. Also, nutrient deficiencies such as those involving omega 3 fatty acids may worsen behavioral symptoms such as irritability and hyperactivity. As such, it’s entirely possible that taking supplements may improve such symptoms in some individuals with ASD – especially if the individual has clinical or laboratory evidence of low levels of crucial vitamins, minerals or other nutrients.

In recent years, researchers have looked deeper into how well particular vitamins, minerals and nutritional supplements lessen the severity or intensity of core autism symptoms – namely communication difficulties, social challenges and repetitive behavior. The results of these clinical studies have been mixed.

One recent large study examined the effect of an over-the-counter supplement called Syndion on 141 children and adults with autism, as compared to the effects of a placebo pill. The researchers reported that the product effectively raised levels of vitamins and minerals in the blood. They also showed that it produced no significant side effects during the 12-week study. The study did not demonstrate meaningful improvements in autism symptoms according to three out of the four assessment tools used. It did, however, show modest but statistically significant improvements on a fourth measure (the Parental Global Impressions-Revised questionnaire) in terms of hyperactivity, tantrums and receptive language.

When interpreting the meaningfulness of these results, readers may take note that the two lead authors were also the developers of the commercial product being tested.

Despite the limitations of this study, it raises important questions as to whether vitamins may be helpful in addressing the core symptoms of autism. It is important to continue supporting research that will provide parents and individuals with clear answers about the value of vitamins, minerals and other nutritional supplements in ASD. Autism Speaks is currently funding several projects to this end, including a new study investigating the possible role of carnitine deficiency in some individuals with ASD. (Carnitine is a nutrient used by cells to process fats and produce energy. It is abundant in red meat and dairy products, but some individuals appear to have difficulties absorbing and/or metabolizing it.)

We are also funding an ongoing collaborative project, through five Autism Treatment Network sites, to collect extensive information on the dietary intake and nutritional status of children with ASD.

If you are worried that you or your child may have a nutritional deficiency, supplements may be a good option to consider. It is important that you consult with your doctor about brands and dosages. Supplements vary in quality and potency, and some may have harmfully excessive levels of certain vitamins, minerals or other ingredients.

Explore more of the studies we’re funding through our grant search, and find more news and perspective on the Autism Speaks science page.