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Posts Tagged ‘Autism Treatment Network’

Medical Home Important for Autism Treatment and Family Support

September 2, 2011 Leave a comment

Having one comprehensive “medical home” is crucial for families of children with special medical needs. That’s the conclusion of a new report in the journal Pediatrics. And it’s the philosophy at the heart of Autism Speaks Autism Treatment Network. Read more on our science news page

ATN welcomes families as advisors

June 22, 2011 4 comments

This is by Staff blogger Rick Kolan, Program Officer with the Autism Treatment Network at Autism Speaks.

Organizations strive to please those they serve, often saying that “the customer is always right.” Striving to meet, and if possible, exceed customers’ expectations is a common business goal. To adequately meet these needs, businesses frequently solicit customer feedback on their products and services in the hope of improving performance.

As Autism Speaks’ Autism Treatment Network (ATN) sees its fourth year, we have taken that concept to the next level. We have engaged families at each of our ATN sites to constitute a Family Advisory Committee. Their role? To provide their perspective and that of their children concerning the care and service they receive at our ATN centers. We have also asked them to help map our direction into the future, providing us ongoing advice on the issues that are important to them now and as their children progress.

Since the beginning of the year ATN sites have been selecting parent representatives and alternates willing and available to attend local ATN site meetings, conference calls and the periodic national meetings of ATN leadership and clinicians. The aim is for the committee to help guide ATN policy and planning at the national level while partnering with their local ATN clinicians to enhance care and services at the individual site.

During the week of June 8-10 the Family Advisory Committee (FAC) met in Washington DC to take part in an ATN/AIR-P Steering Committee Meeting.  The event marked both the kick-off of the ATN/AIR-P Quality Improvement Collaborative and the inaugural meeting of the FAC.

FAC members met for the first time on Wednesday morning.  As representatives introduced themselves around the conference table, it was clear that each brings a unique array of skills and experience. Yet in spite of differences in their backgrounds they immediately found common ground. Each member has a sincere desire to improve care for people with autism, from age toddler to adult, in the belief that the ATN’s commitment to family-centered care is more than simply words.

Even at this initial meeting the FAC provided an important perspective as certain themes repeatedly emerged in the course of open discussion:

  1. Aging and ASD
  • What will happen to my child as he/she gets older? There is plenty of support while they are young, but parents are commonly at a loss as their children get older.
  • Continuity of care across the spectrum, as well as across age groups, is needed.
  • Transitions – to adolescence and to adulthood—are especially difficult.
  • Families need guidance in advising employers on how to support workers on the spectrum.
  1. Affect on family
  • Autism is a family diagnosis.
  • Autism affects where families choose to live.
  1. Transfer of information and knowledge
  • Much of the information families get or give is by word-of-mouth
  • Messages must be delivered in a way so that parents really understand what certain tests and screenings can and cannot do.
  • How do we get information to families that are not directly part our network (families in the “dark spots”)?
  • How do we make sure that needed information is available at the primary care and the well-child levels, so that clinicians and families know what to do if the child starts to change?
  • The culture at the various resources, including doctors, needs to change; just because a tool kit is out there it doesn’t mean the doctor will use it.
  1. Care for the whole-person
  • Care is fragmented with different sectors dealing with different aspects of a child’s needs: schools, PCP, speech, early intervention.
  • Schools as well as doctors need to see the child as a whole being.
  • Schools and doctors need to collaborate on the child’s care. It doesn’t work if the doctor says the child should have certain accommodations or support and the school doesn’t work to make that happen.
  1. A key Challenge
  • What can we do when we develop effective therapies or other solutions but families cannot afford them and insurers won’t pay for them?

This first FAC meeting demonstrated the group’s potential for generating practical ideas that will keep the ATN focused on the family as we move forward.

CAA Success Stories: A ‘Godsend’ for Families in Arkansas

June 15, 2011 4 comments

Dianna Varady is currently the Statewide Chapter Advocacy Chair for Autism Speaks in Arkansas, advocating for autism research and services at the federal level, as well as leading the grassroots effort that resulted in Arkansas becoming the 24th state to enact autism insurance reform in 2011.  Dianna has a son with autism.

What a difference six years makes.  In July of 2005, my husband and I were in a meeting with our son’s treatment team when we were told very bluntly, “We think you’re dealing with an autism spectrum disorder here.”  Difficult to hear, but exactly what I needed to pull my head out of the sand and get to work.  I wanted answers….how did this happen and what do we do now???

It took us about three days to discover that we had a world-renowned autism researcher right here in Arkansas.  Dr. Jill James at the Arkansas Children’s Hospital Research Institute was studying folate metabolism in children with Down syndrome when she accidently stumbled upon a significantly abnormal metabolic profile in one of her control subjects – a sibling of one of her study subjects who was diagnosed with autism.  Pretty soon she had identified several more children with autism who had the same bizarre profile.

We contacted Dr. James right around the time her study was being published.  At the time, she was presenting her findings to physicians and researchers around the United States and to her colleagues here at Arkansas Children’s Hospital.  Pretty soon we had dozens of physicians and researchers interested in autism.  Here in Arkansas, doctors from many of the specialty clinics were interested in conducting their own research.  We had an abundance of talented and passionate professionals just waiting for an opportunity to put all of their new-found energy and enthusiasm around autism to good use.  Then, in 2006, along came the Combating Autism Act (CAA.)

Thanks to the CAA, Arkansas now has an Autism Treatment Network (ATN) Clinic, where our developmental pediatric teams are identifying children with autism using state-of-the-art evaluation tools and contributing to a nationwide data registry.  The same ATN team also recently held its second annual “Team Up” autism conference for parents, educators, and clinicians to learn from some of the most respected professionals in the field of autism.  We have a Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the University of Arkansas for Medical Sciences (UAMS), also funded through the CAA, that provides graduate students in a number of different disciplines the opportunity to work together on a multidisciplinary team.  And, probably most exciting of all, the CAA has funded research here in Arkansas.  An autism prevalence study is underway, and we have studies funded by CAA that are looking at diet, nutrition, physical health and quality of life.

One of the fringe benefits of the programs and studies provided through CAA funding is the way all this activity around autism has brought together a team of specialists at Children’s Hospital to develop an autism clinic with a geneticist, a gastroenterologist, and a neurologist.  These three doctors collaborate with one another to provide top-notch care for their patients, and to improve the overall experience for families in their clinic.  For our family this has been a godsend.  Many of the answers we were seeking in 2005 have been found thanks to these dedicated and compassionate doctors.

Naturally, being an Arkansas native, I’m proud as a peacock of all this activity right here in my back yard.  But the CAA is scheduled to expire September 30, jeopardizing continued federal funding for many of these activites. That’s why it’s CRUCIAL for Congress to move quickly and approve the Combating Autism Reauthorization Act (CARA.)   If not, all of this research and these advancements in the field of autism could disappear.  And so could our hope for a cure.

Dianna Varady (left), with Arkansas Rep. Uvalde Lindsey and Autism Speaks Senior Policy Advisor & Counsel Lorri Unumb following passage of Arkansas insurance reform bill

This legislation must be passed by Congress and signed by President Obama by September 30th, 2011. If you would like to get involved to make sure that happens, please visit www.autismvotes.org/action-cara. Autism Votes makes it easy to participate. Autism Speaks – It’s time for Congress to listen.

What I Heard

The author of this post is Jess, who can be found at Diary of a MomThere she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical ten-year-old, and eight-year-old, Brooke*, a loving, talented, hilarious second grader who has autism.
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Last Thursday evening, I attended a talk at Boston University with Dr. Geri Dawson, Chief Science Officer for Autism Speaks. What follows is the letter that I felt compelled to write to her after hearing her speak.

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Ed note: I have written before about Autism Speaks and why I have stuck with them through some difficult times. If you’re interested, please click –> HERE <– to read a post that I believe pretty well sums up my position.

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Geri,

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It was such a pleasure seeing you last  week . I’ve never been one to attend a science lecture – at least not on purpose. But of course, I do a lot of things these days I never thought I would. (Like saying, “Yes, we met atthe White House.“)
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Life has changed.
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So I actually thought I was looking forward to listening to you speak.
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Lady, I had no idea.
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You proved that night that Autism Speaks is not just speaking, but listening. You made me, as a parent feel like a partner. You made it abundantly clear that you have taken in what you’ve heard from the community and incorporated it into what you say, what you do, how you think, and where you spend your (our) time, energy and money.
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I heard it in the Vision Statement, newly reflective of the diversity of perspectives within our community. In words carefully chosen to recognize and embrace radically different – even opposing – views on cure and acceptance. In a driving theme that seeks to unify, not further divide.
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“A world in which suffering because of autism no longer exists.”
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Amen.
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I heard it as you espoused the values that drive your research. Urgency – above all urgency. “We CAN hurry science,” you said. Scientific Excellence ensured by rigorous standards and consistent and in-depth review.Families as partners. Above all, I heard it when you referred to the individuals affected by autism as True North – always the guide, always the driving force of all that we do.
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I heard it as you talked about dissemination – the need not just to research, but to execute. To share knowledge, best practices, and to MAKE INNOVATION IMMEDIATELY ACCESSIBLE TO THOSE WHO NEED IT NOW.
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I heard it as you talked with pride about ’buying careers’ – when you told us with obvious pride that while 85% of AS funded fellows were brand new to the field of autism research, 95% remained after the fellowship and 100% – every single one – credited the AS fellowship with the decision to devote their careers to autism research. I had to process that for a while. 85%.
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I heard it when you talked about the leverage of funding from grants. When you told us that federal funding, private grants and other sources added ten dollars to each dollar spent by AS on the first 107 grants seen to completion. Ten to one.
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I heard it when you said the words I use constantly – “There isn’t AN autism. There are autisms.” The place came this close to sounding like a Baptist revival as I nearly shouted “Amen, sister! Preach on!” from the audience.
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I heard it as you connected the dots that so many parents have been connecting without support when you said, “Autism is not just a brain disorder; it is a whole body disorder.” Did you see me nearly trembling in the audience? YES, I thought, YES.
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I heard it when you said, “Behavioral challenges can be due to underlying medical conditions.” I thought I knew how badly we all needed to hear that reflected back to us by those with the power to affect change. I underestimated the emotional impact of hearing it out loud. It turned out to be pretty intense. Validation can be like that I guess.
I heard it as you talked about sleep issues, seizures and epilepsy, GI disturbances, food sensitivities and depression and anxiety. I heard it as you said, “We are working on understanding the obvious connections between the gut and the brain.” and when you talked about the M.I.N.D Institute GI study which you funded recently to the tune of nearly $800,000.
I heard it when you talked about the need for comprehensive care. When you talked about the Autism Treatment Network’s (ATN) academic center model. I heard it as you talked about these centers of excellence combining specialties in neurology, pediatrics, psychiatry, GI, sleep, genetics, pain and immunology and the need to create so very many more. I heard it as I said under my breath, “Yes.”
I heard it as you talked about the need to investigate nutritional deficiencies, bone density issues, creatine deficiencies, iron deficiencies, oxidative stress, mitochondrial disorders and metabolic issues.
I heard it when you said that you’ve got Dr. Martha Herbert working on establishing working groups to study the biomedical interventions that parents have been begging scientists to research. Thank God.
I heard it when you talked about the high risk natal study following more than 2,000 infant siblings of children with autism, who are at higher genetic risk for developing the disorder. I heard it when you explained that the infants are followed from close to conception through early childhood, with researchers tracking and investigating EVERYTHING in their world, from maternal infections in pregnancy to vaccines to nutrition to environmental toxins. I heard it when you said that they are collecting dust samples from the homes and using new brain imaging technology to monitor development on a level never before possible.
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I heard it when I asked you if you are looking at the effects not just of individual vaccines, but of administering them in combination and you said, “I simply believe in good science. If the science has integrity, I’m open to investigating anything that will help us find answers.”
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I felt it as my breath caught in my throat and my eyes filled with tears when you talked about the mind-blowing progress being made with genetically altered mice and the very real differences being seen in their socialization, vocalization and repetitive behaviors after treatment. I knew it wasn’t just me as my dear friend Rachel broke down next to me.
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I heard it when you talked about innovation. About the potential being shown by early trials of drugs like Memantine and Arbaclofen. I heard it when you talked about the possible, relatively near-term tractability of single-gene and possibly even multiple-gene mutations.
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I heard it in everything you said that night.
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It was the sound of US – of OUR stake in this, OUR community, OUR words, OUR HOPE.
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On Friday morning, my husband, Luau wrote the following on his blog. He typically writes about running, which doesn’t tend to overlap much with autism. But on Friday, because of you, it did.
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I need to share his words with you. I need you to know how much this matters. To our precious children, of course, above all. But also to US – to their mothers and fathers, their siblings, their grandparents, their aunts, their uncles, their cousins, and, if they’re lucky enough to have them, their friends.
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Just like funding, for every one of our children there are ten more whose fate is tied to the first. And a parent whose heart is leveraged to their (and your) progress ten times over.
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***
Quicksand And A Rope from Luau’s blog, Run Luau Run 

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I am running – pounding the treadmill.

My demeanor is calm, almost stoic, but I am sinking.

Sweat is dripping out of every single pore of my body. I am drenched. The display of the treadmill is spattered.

I’m waiting…waiting for the endorphins to kick in; waiting for the wave of “feel good” to wash over me and wash away the troubles of the day, the 1000 paper cuts that are threatening to bleed me out. I wait, and when I feel like I’ve waited long enough, I double-down and pick up the pace. The sweat continues to pour out of me, now like a leaky bucket losing water.

My breathing becomes labored and yet, I am still calm, stone-faced and waiting.

When the endorphins finally kick in, it is almost anti-climactic.

Yes, I feel good.

Yes, there is some release of tension.

But there is an underlying sense of dread, of sadness, of disappointment, of loneliness.

Something is not right. There is still a weight upon my chest, my shoulders, pressing down. The immediate world around me is no longer bending to my will. The destiny of me and my family no longer seems to be in my hands.

***

I think about Brooke’s future a lot. I know that any parent thinks about their child(ren)’s future, but when you have a child with special needs, like Brooke has, those concerns get multiplied. What roadblocks will autism throw up against her as an adult? as a teenager? as a tween? next week? It doesn’t seem to stop. A few weeks ago we had a scare that Brooke might be suffering from brain seizures (nearly 1/4 of kids on the autism spectrum will at some point suffer a seizure of some sort). She had been rolling her eyes into her head sometimes at a terrifying rate of 10 – 15 times per minute. In the end, after an EEG and an evaluation, it was determined that she was not suffering from seizures, but rather a motor tic associated with autism.

Not that I would have wanted it to be a brain seizure, but I thought, “Great, just one more thing that is going to make it difficult for her. Great!” Fortunately the eye rolling has subsided immensely. I now see her do it maybe 10 times in a day as opposed to 10 times in a minute.

That, along with a few other factors related to Brooke, have taken their toll I think. My sleep has suffered. My running has suffered. My motivation to do ANYTHING has suffered. I have been sinking slowly in a quicksand that has threatened to swallow me up.

***

But then last night I was thrown a rope.

Jess and I went to listen to a talk given my Autism Speaks Chief Science Officer Geri Dawson. She spoke on the state of science and research in the field of autism – where we were, where we are and where we just might be going in the not-so-distant future. Jess is much better at conveying events, so I will leave it to her to elaborate on the talk, but I will tell you this – we were sitting with Mrs. SGM, a military wife/mother of a little one with autism. At the end of the talk, Mrs. SGM went up to Dr. Dawson and told her that this was the first time she had been to something like this where she walked away with a sense of hope – a true sense of hope.

That is exactly how I felt.

It took those words for me to realize that my “hope” had been waning over the past few months. It was more of a general deterioration of my hope for the future. As the economy continues to struggle and town budgets get tighter, administrators eye more and more the funds spent on a child like Brooke. Long-term views are replaced by short-sighted ones. It’s happening everywhere and our community is no exception. So my hope for Brooke had taken a beating.

Until last night.

What she said will not impact the budget issues each town faces, but as I listened to Dr. Dawson speak, I was lifted by the possibility that big breakthroughs are right around the corner – that there may be a time, relatively soon, when Brooke’s autism won’t demand so much attention, so much manpower. My hope for a truly independent adult Brooke was reborn.

***

And with that, a certain amount of weight was lifted off of my chest. This morning I woke up just after 4AM and went for my run (10 miles, putting me over 1,000 miles for 2011!). There was the usual dragging my butt out of the comforts of my bed, but there wasn’t the sense of defeat and dread that has accompanied the moment of consciousness this past month or so.

Did Dr. Dawson’s talk resolve the issues we are currently dealing with now? No. Not even a little. BUT, as I look out over the horizon of time, I can see the storm clouds starting to break. The skies aren’t quite as dark or threatening and I think I see some sunshine coming through.

Thank you Dr. Dawson and Autism Speaks for inadvertently throwing me a rope and bringing back the sun.

Little darling, the smiles returning to the faces 
Little darling, it seems like years since it’s been here 
Here comes the sun, here comes the sun 
and I say it’s all right

-The Beatles
Thank you, Geri. Thank you for hearing us. Thank you for dedicating your formidable intellect and indefatigable spirit to our families. Thank you for pressing on in the face of so many challenges and believing that as overwhelming as this all is, change – real change – is possible. And thank you to all those who support and share the work that you do.
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Because in your work, there is HOPE.
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Sincerely,
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Jess
You can read this full entry on Diary of a Mom, here.

Treatments for ASD: how do we develop better evidence?

August 12, 2010 6 comments

Staff blogger Nancy Jones, Ph.D., Program Director for the Autism Treatment Network and the Autism Clinical Trials Network

Finding evidence-based treatments is one of the greatest challenges for those seeking treatments for autism, particularly for those with complex or severe health issues. While support for behavioral treatments is robust, rigorous evidence for pharmacological and biomedical treatments is still needed. As individuals with ASD have different needs and different levels of symptom severity, it is critical to have a range of treatment options known to be reliably safe and effective. A report by the Cochrane Collaboration, released on Monday, reported on a comparative analysis of randomized controlled clinical trials conducted to date that examined the effectiveness and safety of various SSRIs (selective serotonin reuptake inhibitors) as treatments for core symptoms of autism and other associated symptoms. SSRIs have a long history of use as treatment for disorders such as depression, anxiety and obsessive compulsive disorder, and have been found in small studies and clinical use to be helpful for repetitive and compulsive behaviors in autism. Based on this recent analysis, the authors conclude that there currently is no evidence to support the use of SSRI’s for children with ASD and limited evidence for their use of as a treatment for adults with ASD.

What does this study mean for us now? Does this mean that we know for sure that SSRI’s don’t work at all for individuals with autism? With the evidence that we have to date, it may be premature to say we have definitive evidence to rule out the effectiveness of such treatments for some individuals with autism. It does suggest, as is stated in the report itself, that at this point, for the treating physician, that a decision to use on SSRI would need to be made on an individual basis. There are as of now only a few randomized controlled trials of SSRIs in children, five of which were reported on in the paper, and there have only been two large scale studies to date, the NIH-funded study of citalopram, which was included in the Cochrane review, and the Study of Fluoxetine in Autism, which was not included in the review. The five studies also were focused on different types of outcomes, making a harder to compare across the limited number of studies to determine relative effectiveness for the different outcomes.

The review does highlight some of the key challenges for doing treatment research in autism. One major challenge is dealing with the fact that individuals with ASD may manifest the core symptoms of autism, as well as associated symptoms,to different degrees and may suffer from different levels of symptom severity.  In order to address the needs of this diverse population we will need to carefully consider how best to conduct research that will be comparing individuals with autism with the same types of symptom profiles. For example, both of the larger studies of SSRIs observed that children showed improvement over the course of the study, but level of improvement was not any better for the treatment group than the comparison (placebo) group. This means that the treatment may be effective for at least some subgroups of children. A recent presentation at IMFAR of additional analysis of the citalopram study, identified certain factors that may distinguish those who responded to the medication and those that did not. These may be significant in understanding treatment response.

Does this mean that we know for sure that SSRIs will work for everyone? No. But there may not be enough information now to say we have sufficiently determined for whom the SSRIs may work, for what type of autism symptoms and why. Future research needs to focus on identifying which subgroups of people with ASD respond to which medications.

It is important to continually provide families with the best evidence about treatments, so they can make informed decisions and have more treatment choices. Autism Speaks continues to support treatment research but is also launching new initiative to address the challenges faced in doing treatment trials and translating our basic science discoveries into to viable treatments.  A major focus of this effort is to identify biomarkers that can help identify subgroups of individuals with ASD for whom specific treatments may be effective.

Reference:

Source reference:
Williams K, et al “Selective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders” Cochrane Database of Syst Rev 2010; 8: CD004677.

For more about the Cochrane Collaboration:

How the Autism Treatment Network Helped My Son

May 10, 2010 27 comments

This is a guest post by Judith Ursitti. Judith is Regional Director of State Advocacy Relations at Autism Speaks and has been involved in advocacy since her son Jack’s autism diagnosis almost five years ago.

By now Jack and I had grown accustomed to the routine.

You hear of an excellent doctor. You absolutely must get in to see them. You call to make an appointment. Wait for months and months and months. Finally get there. Sit in the lobby, clipboard on your lap, writing down medical history and group i.d.’s.

Jack screams for a few moments as you wait. People stare. We follow the nurse to the back. Answer questions. Show said doctor that you are a pro at shouldering the reality of it all.

Chin up. Head home.

Empty handed…

Not quite two years ago, Jack and I had another one of what I thought would be one of those appointments. One filled with all the can’ts and doesn’ts..

But this was our first visit to an Autism Treatment Network (ATN) site.

I picked Jack up early from school that day and we made the appointment on time. We sat in the lobby of the LADDERS Clinic with the clipboard. Jack screamed for a few minutes and then bounced up on down on the chair by the window.

And then the nurse led us back.

And we met Dr. Margaret Bauman.

And Dr. B was enamored.. “This guy is different!” she declared.

She drilled me with questions, which I answered rather typically I thought. But Jack’s behavior set the tone. He loved Dr. B. He flirted with Dr. B.

We spent well over hour with Dr. B. She didn’t just focus on his deficits.  True, he was nonverbal.  True, he wasn’t pointing yet.

“His social referencing… it’s beautiful!” she declared.

She prodded him patiently from head to toe.  Took notes.  Contemplated what might be going on with him.  Why he wasn’t talking to us.  Why his autism remained so severe.

And then she gave me a plan.  (I’ve learned since then, that’s what they do at an ATN site.  They don’t just think about the brain. They think about the whole body.)

Dr. B. ordered blood work for the routine genetic testing.  But Dr. B also wanted to make sure Jack wasn’t having G.I. issues, so she referred us to the ATN gastroenterologist.  Allergies can really be an issue for kids with ASD, so she referred us to their allergist.  We discussed sensory issues.  Since he was nonverbal, we talked about different types of augmentative communication devices.  She talked to me about Jack’s occasional sleep issues and we devised a plan to address them.

I must confess that at that very moment, as we worked on Jack’s treatment plan, I allowed it to creep in. That provocative, luxurious sensation called

Hope.

I’ve always felt so connected to Jack. Engaged. Sometimes it’s hard to for others to see, but there is a sparkle there.

Normally when Jack is being evaluated or examined, we only hear words like “challenged” or “severe.”

But Dr. B didn’t use those words. To the contrary, she recognized the sparkle right away.

As I pushed the glass door open and we walked out into the parking lot, a fistful of lab-slips in-hand, I felt a new spring in my step.

Careful, I thought to myself … Remember, the Dr. B really doesn’t have any answers.

I elected to savor the moment.

Jack smiled and jumped into a puddle, giggling as we headed to the car.

Two years later, I’m happy to report that Jack remains a patient at LADDERS.  He started talking to us about six months ago.  His favorite phrase at the moment: “No way…”

The ATN (an initiative of Autism Speaks) is the nation’s first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN offers families care from doctors highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community. In particular, the ATN is dedicated to developing better ways to identify, manage and treat the physical health conditions of children with autism. And as treatments for these conditions become better defined and recognized, it is the aim of the ATN to see insurers routinely recognize the autism diagnosis and cover physical health treatment.

What Does Genetics Have to Do with Treatment?

March 15, 2010 1 comment

Finding appropriate treatments for autism is a challenge for families and clinicians alike. While behavioral treatments are an effective mainstay of therapeutic approaches, many individuals with autism benefit from the addition of medicinal interventions, particularly for problem behaviors, severe self-injury, and disruptive repetitive behaviors. A major impediment to finding effective treatment regimens is the fact that individual responses to the same medicine can vary greatly due to genetic background. Finding the most effective dose with the fewest side effects means slowly trying various doses, and possibly having to switch medicines. This is not only a challenge for the physician, but is also a confounding factor in large-scale clinical trials that aim to determine the overall effectiveness of a medication.

5|25: Celebrating Five Years of Autism Science Day 23: Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism

February 23, 2010 1 comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 23rd item, Gastroenterology consensus recommendations provide recognition of the need for specialized approaches to GI problems in children with autism, is adapted from a 2009 press release. 

Gastrointestinal (GI) problems are a commonly expressed concern of parents of children with autism spectrum disorders (ASD), but families have often found it difficult to find appropriate care for these issues. In December 2009, a consensus statement and recommendations for the evaluation, diagnosis, and treatment of gastrointestinal disorders in children with ASD were published in Pediatrics. These recommendations are an important step in advancing physician awareness of the unique challenges in the medical management of children with autism and will be a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD. The reports highlighted the crucial need for information to guide care, and emphasized the critical importance of fostering more research in this area, including genetic research, to support the development of these guidelines.

“The Pediatrics paper represents long-sought recognition by the mainstream medical community that treatment of GI problems in children with autism requires specific and specialized approaches,” reacted Dr. Dawson. “Autism Speaks has been actively engaged in the study of GI problems associated with children with autism, working toward enhanced medical community awareness for over five years through its research agenda and the Autism Speaks’ Autism Treatment Network (ATN). Dan Coury, M.D., ATN medical director, commented, “We are delighted to see the publication of important information that can support clinicians and caregivers in providing better care for children with autism, particularly with GI concerns, as parents unfortunately very often find it difficult to identify physicians who have an understanding of these issues and are able to provide appropriate medical care for their children. GI and pediatric specialists from six of the ATN sites participated in the forum and in the development of these recommendations, which shows the power of interaction among the communities and individuals dedicated to this problem. Autism Speaks is already engaged in the crucial next step which is to move beyond these consensus-based recommendations to develop evidence-based clinical guidelines.” In addition to development of evidence-based clinical guidelines for GI issues, the ATN is also currently working on evidence based clinical guidelines for medical management of sleep, and neurologic disorders associated with autism. “Delivery of evidence-based clinical guidelines will serve as excellent opportunities for future training and education of physicians,” added Dr. Dawson.

The consensus statement highlights several important themes, the first emphasizing that GI problems are a genuine concern in the ASD population and that these disorders exacerbate or contribute to problem behaviors. The need for awareness of how GI problems manifest in children with autism and the potential for accompanying nutritional complications and impaired quality of life were also emphasized.

In the second paper, the authors make consensus recommendations providing guidance on how current general pediatric standards of care that can and should be applied for children with ASD. George Fuchs, M.D., a co-author on the two papers and chair of the ATN GI Committee remarked, “The recommendations provide important guidance for the clinician to adapt the current practices of care (for abdominal pain, chronic constipation and gastroesophageal reflux) for the child with autism. The recommendations from the Autism Forum meeting complement the ATN’s on-going work to develop evidence-based, ASD-specific guidelines. The ATN is currently piloting newly created guidelines and monitoring their effectiveness. We anticipate this data will contribute to an evidence-based foundation to support best practices for GI problems in ASD.”

Autism Speaks is committed to the sustained support of efforts that address co-morbid medical conditions in the ASD population. In recognizing that there’s not enough evidence in any GI area and more research is needed, the Pediatric papers reaffirm the importance of the recent November 2009, Autism Speaks sponsored symposium and workshop on Gastrointestinal Disorders in Autism Spectrum Disorders. The symposium and workshop represented an important partnership with the American Academy of Pediatrics, and the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – the largest professional society for GI and nutritional specialists, and a professional authority for the development and implementation of pediatric GI guidelines. The symposium raised awareness and provided the latest scientific information to an audience of 168 researchers, clinicians, and pediatric GI and nutrition specialists, most of whom had limited expertise in autism. The symposium was followed by a workshop that brought together a diverse group of experts in GI, nutrition, pediatrics, pain, ASD, and biological research. Recommendations were developed for an expanded and targeted research agenda for the field that will address current gaps in the knowledge base and aim to advance evaluation and treatment of ASD-GI disorders. Proceedings from the meeting are scheduled to be published in 2010. A unique and important element in both the Symposium and Workshop was the inclusion of parents of children with ASD.

Did you know?:  Autism Speaks’ Autism Treatment Network (ATN) is developing  evidence-based guidelines that will provide specific guidance to physicians on how to address a number of medical issues of concern for children with ASD.  The ATN is currently piloting a GI guideline algorithm (decision flow charts) for the assessment and treatment of constipation, and a sleep guideline algorithm for insomnia. The ATN is also working on guidelines in the areas of psychopharmacology and neurology. For more information on ATN guideline activities, please see www.autismspeaks.org/airp. 

On the Release of the GI Consensus Statement and Recommendations in Pediatrics: The ATN’s role in Moving from Consensus to Evidence

January 6, 2010 Leave a comment

By George J. Fuchs, M.D.

The release today of the consensus statements and recommendations for the evaluation, diagnosis and treatment of gastrointestinal (GI) disorders in Pediatrics provides much needed guidance to clinicians and practitioners involved in the care of children with autism spectrum disorders (ASD) in the recognition, evaluation, and management of abdominal pain, chronic diarrhea, chronic constipation and gastroesophageal reflux disease. Given the difficulties some children with ASD experience in communicating pain or discomfort, these recommendations mark an important step to understand and characterize the manifestation of gastrointestinal complaints in these children. They also serve to bring order to the diagnostic and treatment procedures for parents and physicians. While the expert recommendations break new ground, we anticipate that they are a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD.

Several of the authors on these two papers, including myself, are pediatric gastroenterologists as well as active members of the GI Committee of Autism Speaks’ Autism Treatment Network (ATN). Through the ATN GI Committee and the federally-sponsored Autism Intervention Research Network on Physical Health (AIR-P), the ATN is turning consensus-based recommendations into ASD-specific clinical evaluation and treatment algorithms. These will be based on data (where it exists) and guidelines for pediatric GI conditions for neurotypical children that we modify for children with ASD, supplemented by expert opinion that supports the effectiveness of the recommended procedures.

The ATN is working closely with the National Initiative for Children’s Healthcare Quality (NICHQ) (http://www.nichq.org/), an organization recognized as expert in pediatric guideline development. Together, we are in progress of piloting of the first developed algorithm which is for the evaluation and treatment of constipation at several ATN member sites. The data we collect from this pilot work and subsequent broad implementation across ATN sites will eventually contribute to the development of evidence-based guidelines. The ATN is a highly unique resource in this effort, in part because of the ATN Registry which collects and analyzes data on over 1700 ATN children with ASD.

The eventual development of ASD-specific evaluation and treatment algorithms for GI disorders and other conditions that trouble children with ASD means that physicians and other care providers who use these algorithms will have greater clarity on the diagnosis, evaluation and treatment of these conditions. For families, these algorithms will provide confidence that a chosen course of action is based on careful testing in clinical practice and greatly increase the likelihood of successful identification and management of their children.

For the time being and until the availability of the ATN evaluation and treatment algorithms, parents are urged to let their children’s doctors know about the release of the important consensus statements and recommendations on-line in Pediatrics so that that they might be applied to their child’s care.

George J. Fuchs, M.D.Dr Fuchs is Professor of Pediatrics, University of Arkansas for Medical Sciences and Medical Director, Gastroenterology, Arkansas Children’s Hospital. He is a member of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, (NASPGHAN), and is the Chair of the Gastroenterology Committee of the Autism Treatment Network.

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