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.

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.

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!)”

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.

Guest blog post from Autism Speaks Science Board Member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventures of a Free-Range Aspergian

According to a press release I received this morning, new research from Cold Spring Harbor Lab might help explain how a gene mutation found in some autistic individuals leads to difficulties in processing auditory cues and paying spatial attention to sound. [Editor’s note: See our related science news story on this Autism Speaks-funded study.]

The study found that when a gene called PTEN is deleted from auditory cortical neurons—the main workhorses of the brain’s sound-processing center—the signals that these neurons receive from local as well as long-distance sources are strengthened beyond normal levels.  That’s the first interesting part of the study.

PTEN has been associated with autism in a number of previous studies. In particular, the PTEN variation has been found in autistic people with larger heads, and it’s suspected as a cause of both additional connectivity in the brain and additional brain cell growth.

How many of today’s autism population have a PTEN variation?  Do you?  No one knows.  It’s one of many genes researchers are studying.

What I do know is that I have abnormal sensitivity to sound, as do many autistic people. Many of us are easily overwhelmed by noises that go unremarked by the rest of the population. For some time, I have realized my excess sensitivity is a two-edged sword. On the one hand, it gave me powerful insight into music and facilitated my earlier career in rock and roll. On the other hand, it has often put me at a disadvantage as I’m rendered inoperative by what others see as ordinary situations.

It’s interesting to read that PTEN may be a cause of that difference. Understanding the genetic foundation of why that happens doesn’t do me much good, but the next part of the study might:

Researchers found that those can be blocked by rapamycin, a drug currently in use as an immunosuppressant. Rapamycin as an autism therapy has been studied before and found beneficial in some cases. This study is one of the first that sheds light on “why” and speaks to a specific mechanism by which we may be disabled.

Now that I’ve come to know many people on the spectrum, I realize I am one of a fortunate few who have significant sensory sensitivity without being disabled by it.  The vast majority of autistic people who write about sensitivity do so in the context of disability. If there were a way to reduce sensory overload, I’m sure a number of folks on the spectrum today would like to hear about it.

One next step might be to see if rapamycin has the same effect in humans, and what other unforeseen effects it may have. Rapamycin has already been tried as a therapy in other contexts relating to autism. A targeted study that looked at the drug’s effect specifically on sensory overload would be very interesting.

It’s possible that this research illustrates a first step on the path to remediating a specific component of disability for many people on the spectrum. Much more testing will be needed to really know if that’s true, but it looks like a promising start.

My biggest concern is that rapamycin may have unforeseen effects elsewhere in the brain, and we won’t be able to understand that until we have conducted a sizeable human trial. We can only do so much by observing and extrapolating from mice.

An interesting aside is that Dr. Zador’s research further supports the emerging idea that excessive brain plasticity is a key component of the brain differences that lead to autism. His research premise is that the PTEN variation causes excess connectivity, and connectivity is a key element of plasticity. I’ve written about that idea in earlier posts.

I read a lot of talk in the autism community that questions why we spend money on genetic research when today’s autistic population needs help now. There is a popular perception that genetic research can only benefit unborn generations, or even worse, be used as a tool for selective abortion.

Dr. Zador’s study shows a clear pathway from a basic genetic study to a possible therapy for autistic people today, if they suffer sensory overload issues. It’s a perfect example of why this kind of work continues to be important and needs to be funded alongside all our other efforts in the autism research arena.

One of the pathways regulated by the PTEN protein involves shutting down an intracellular enzyme called mTORC1, which promotes cell growth, among other things…. While Zador is excited about “this finding that suggests that mTORC1 could be a good therapeutic target for some cases of PTEN-mediated brain disorders,” he is also keen to further pursue his team’s new evidence that cortical hyperconnectivity could be the “final pathway” by which diverse ASD genetic pathways lead to a single ASD phenotype. “Using cortical connectivity as a paradigm for assessing ASD candidate genes could provide insights into the mechanisms of the disorders and perhaps even give us clues to formulate new therapeutic strategies,” he states.

Dr. Zador’s leap from a subtle variation in genetic code to a specific behavioral aberration represents a brilliant leap of intuition and reason, backed up with careful lab work. It’s the kind of result I hope to see when I cast my vote for further genetic studies. This work was originally funded by Autism Speaks and NIH four years ago.

Here’s another really fascinating point to ponder. The PTEN genetic variation has been already associated with certain people with severe autistic disability and people with tubular sclerosis. Now, by associating PTEN with auditory sensitivity, we confront the question:  Do people like me have the PTEN difference too?  No one knows, because that study has never been done.

I’ll just say one more thing in closing. The discovery that PTEN aberrations can lead to sensory overload, and the pathway by which that happens stands separate from any question about rapamycin as a therapy. Don’t let worries about a particular drug blind you to the significance of the first finding.

Other researchers are looking at alternate ways to affect cortical plasticity in general and even connectivity as described in this study.  Rapamycin may end up being a therapeutic answer for some, but it’s equally possible that a better therapy will be developed now that we are beginning to unravel the underlying issues. One day, autistic people who are disabled by auditory overload may be able to “mute” the disability, while retaining enough sensitivity to be exceptional.

That, folks, is what the science is all about.

We are so excited to announce our new partnership with Autisable. Autisable is an online community that connects people who want to tackle the puzzle of autism. They encourage discussion surrounding all aspects of Autism/Aspergers, and associated issues surrounding those with special needs.

Autisable’s goal is to create a community of individuals with various viewpoints surrounding the controversies of autism, and to give back to the autism community through donations to organizations that help the autism community.

Our Blog will be syndicated onto this platform as we are thrilled to become a part of this community, while connecting with others in the autism community.

Friend and subscribe to our blog on Autisable: http://autismspeaks.autisable.com

Don’t have an Account on Autisable? – Please join and share your journey. Start here: http://www.autisable.com/register.aspx

Please join us Thursday Feb. 2nd for “The Doctors Are In!” the next in our ongoing series of monthly webchats co-hosted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D., and our Assistant Vice President, Head of Medical Research Joe Horrigan, M.D.

Held at 3 p.m. Eastern (2 Central/1 Mountain/noon Pacific), this monthly “office hour” will provide ongoing, personal access to two leading clinical experts in the behavioral and medical treatment of autism. Dr. Dawson is a licensed clinical psychologist, and Dr. Horrigan is a board-certified child and adolescent psychiatrist.  Both have extensive clinical experience treating individuals with autism spectrum disorder (ASD).

Drs. Dawson and Horrigan welcome your questions on behavioral therapies, medical issues and other concerns related to autism. However, the guidance provided on the webchat is not meant to substitute for care by a personal physician and other appropriate care providers.

This and future webchats can be accessed via the “Live Chat” tab in the left column of the Autism Speaks Facebook page. You can also set up a personal email reminder with direct link here.

We hope you’ll mark it on your calendar:

The Doctors Are In!
* The first Thursday of every month
* 3 p.m. Eastern (2 Central/1 Mountain/noon Pacific)
* Join via the Live Chat tab at https://www.facebook.com/autismspeaks.

Read the transcript of last month’s “Office Hour” webchat here. 

Guest post by Merope Pavlides, editor of AutismAfter16.com, author of Animal-assisted Interventions for Individuals with Autism and mom to two sons, one of whom is on the autism spectrum.

Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.

On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.

The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.

Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.

Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.

As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.

I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.

Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.

[Editor’s note: Thanks to our grant search engine, you can explore Autism Speaks-funded research concerning adolescents, adults and related services here.]