Archive

Posts Tagged ‘Autism Treatment Network’

Propranolol for Behavior Challenges: Not Yet Ready for Widespread Use

October 10, 2011 17 comments

Posted by Autism Treatment Network Medical Director Dan Coury, MD 

Considerable community and scientific interest has been raised by recent reports that the beta-blocker propranolol improved word use in adolescents and adults with autism spectrum disorder (ASD). It is important to emphasize that this small study does not provide sufficient evidence of effectiveness or safety to support this use of the drug, which is FDA approved to treat high blood pressure. Although we share excitement in seeing medicines evaluated in bona fide clinical studies, families should be strongly cautioned against over-interpreting media reports as endorsement to pursue this treatment for their loved ones–until larger studies show it is safe and effective.

First and foremost, treatment of autism spectrum disorders (ASDs) should include a combination of behavioral and educational interventions. Many children, adolescents, and adults with ASDs also need treatment of associated medical or psychiatric conditions such as gastrointestinal disorders, asthma, anxiety, and symptoms of attention deficit and hyperactivity disorder (ADHD).

While we have strong evidence that our behavioral treatments provide benefit, we need more research on identifying medicines that can help relieve the core symptoms of ASDs and associated behavior challenges. Interest in propranolol began over 20 years ago, with a small study (involving eight adults with autism) that suggested the drug could reduce problematic aggression. In addition, the researchers noted subtle improvements in language and social behavior. They wondered whether this might be related to the known ability of beta-blockers to reduce the symptoms of so-called overarousal. For instance, some musicians and public speakers will take a beta-blocker immediately before a performance to reduce shakiness from stage anxiety.

The authors of that first study called for further research. And the gauntlet was picked up by David Beversdorf, MD, and his associates at the University of Missouri, one of Autism Speaks Autism Treatment Network (ATN) sites. Their latest report enrolled 14 high functioning teens and adults with autism, all of whom used spoken language. They found that, when taking the medicine, some of the individuals used more words over a given period of time. That is, they had greater “word fluency.” On average, the participants showed 25 percent greater word fluency. However, some of the participants spoke fewer words while taking the medication.

What does this mean? These early studies are too small and too limited in their evidence of benefit for us to recommend that adolescents and adults with ASD begin taking this medicine. We know even less about the safety and effectiveness of beta-blocker medications in younger children. As the authors state, further study is needed to confirm both safety and benefits among a wide range of persons with ASD. And if these benefits are confirmed, we need to find ways to identify which people will respond positively to the medication and which will not. Certainly this is not a medication we want to be administering to everyone on the autism spectrum.

These early studies encourage us to pursue further research with propranolol, as we are doing with an increasing number of other medicines that could potentially help relieve the core symptoms of autism–including repetitive behaviors and impaired communication and social behavior. This exciting and encouraging research includes our study of the biological effects and behavioral benefits of both already approved medications and newly developed compounds.

Meanwhile, we have two FDA-approved medications for treating autism-related irritability that includes aggressive behavior and tantrums. They are risperidone and aripiprazole, both of which influence brain levels of the biochemical serotonin. Newer studies are looking at alternative medicines that affect other brain pathways. Early animal research with these compounds has been promising, and studies are now underway in people.

Bottom line: Studies such as Dr. Beversdorf’s are helping us better understand brain function in persons with ASD. This and related studies will ultimately lead us to new treatments and better outcomes. Until then, please stay tuned.

Autism and ADHD

October 4, 2011 54 comments

Posted by Andy Shih, Ph.D., vice president of scientific affairs for Autism Speaks

As researchers and parents, we’ve long known that autism often travels with attention deficit and hyperactivity disorder (ADHD). What we haven’t known before is why that is. Also, few studies have examined how ADHD affects the quality of life of those with autism.

In the past month, two studies have come together to help connect our understanding of autism with behavioral issues such as hyperactivity and attention deficit. The first study looked at gene changes in ADHD and autism. The second looked at how frequently parents see the symptoms of ADHD in their children and how seriously these symptoms affect their children’s daily functioning and quality of life.

The upshot of the first study is that the genetic changes seen in children with ADHD often involve the same genes that are associated with autism. This finding helps explain why children with autism often have ADHD symptoms. In other words, if these disorders share a genetic risk factor, it’s logical that they often occur in the same individuals. Genetic insights, in turn, can help scientists understand underlying causes and, so, may improve how we diagnose and treat these issues.

The second study, described in our science news section, helps clarify both how commonly children on the autism spectrum are affected by ADHD symptoms and documents how this affects their daily function and quality of life. Perhaps the most notable observation was that, even though over half of the children in the study had ADHD symptoms that worsened both daily function and quality of life, only about 1 in 10 was receiving medication to relieve such symptoms.

Clearly, we need more research on whether standard ADHD medications benefit children struggling with both autism and hyperactivity and attention deficits. However, studies have long shown that these medications improve the quality of life of many children with ADHD alone. Autism specialists such as Dan Coury, M.D., medical director of Autism Speaks Autism Treatment Network (ATN), recommend that parents discuss with their child’s physician whether a trial of such medications could be of benefit. (Dr. Coury co-authored the second study.)

On a deeper level, this research raises a question: Why is it, given the same genetic changes, some children develop autism alone, some develop autism and ADHD symptoms, and some develop neither—or something completely different?

I and other geneticists have seen how a given genetic change can alter normal development in various ways—if it does so at all. We have good evidence, for example, that outside influences affect how and whether autism develops in those who are genetically predisposed to it. These influences include a variety of stresses and exposures during critical periods of brain development—particularly in the womb and around the time of birth.

Still, by better understanding how altered genes produce symptoms—be they hyperactivity or social difficulties—we gain important insights into how to develop treatments that can improve the daily function and quality of life of those affected.

Ultimately there’s no substitute for working with your child’s physician and behavioral specialist to address your child’s behavioral challenges and needs within the context of your goals and values. To this end, the specialists at Autism Speaks Autism Treatment Network have developed a medication decision aid—“Should My Child Take Medicine for Challenging Behavior?”—available for free download on our website. Please let us know what you think.

Family Services Office Hours – 09.28.11

September 29, 2011 6 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:47
Welcome to Family Services Office Hours! We are here today to answer any questions you might have and help connect you to resources. Let us know how we can help!
2:55
Comment From Kelly

Hi, I have a 9 year old son that I believe has aspergers. His current official diagnosis is ADHD but he has so many other symptoms. Cincinnati Children’s assessed him several years ago and told us that he was bi-polar. I’d really like to know someplace that I can take him for a full eval. Can you help?

2:56
Hi Kelly! The Asperger Syndrome/High Functioning Autism Tool Kit will be helpful to you. It contains lots of helpful information and resources!
2:58
In addition, the Cincinnati Children’s Hospital is now an Autism Treatment Network site. Here is the contact information: Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Contact: Terry Mitchell
Phone: (513) 636-1665
terry.mitchell@cchmc.edu
2:58
Comment From renaye

I am having a difficult time finding a speech therapist for my grandson who is nonverbal .. none of them take medicaid and there is a waiting list for the one that does.. what do I do.. He is 11 non verbal and we want him to use tap to talk or some assisted device

2:59
Hi Renaye! We have a very extensive resource guide on our website that contains lots of speech therapists. You may want to try contacting others in your area to see if they take Medicaid.http://www.autismspeaks.org/resource-guide
3:00
If you’re not having any luck through Medicaid, you should also ask the school district for your grandson to be evaluated for his speech and language needs which can be included in the IEP guide. Check it out here! http://www.autismspeaks.org/what-autism/your-childs-rights
3:01
Comment From Kimberly Rossi

Hello I was looking to find out where I can get information to help a friend of mine a 26 year old male with autism information about dating. He has a belief that “normal” girls won’t date him because he has autism. He says that he wants to date “normal” girls not those with autism. I’m not sure how to help him he refuses to go to any local mixers that happen in the area. Any suggestions?

3:02
Hi Kimberly! We also have a Resource Library with lots of general resources. We have 2 different pages you may want to check out, our Asperger Syndrome page, as well as our Adults and Young Adults page. There are tons of helpful resources there.
3:02
Comment From renaye

we live in indiana,,, northwest part of the state

3:03
Hi Renaye, I still thiink you will want to call Cincinnati Children’s Hospital Medical Center (Cincinnati, OH), and ask if they know of an expert in your local comunity.
3:04
For everyone else out there, we have lots of different resources in our Resource Library that cover a wide range of topics, like toys and games, autism apps, magazines, books and much much more!
3:07
Comment From Guest

I looking for feeding therapy in Illinois south of Springfield.

3:08
Hi Guest! Thanks for joining us. I suggest you search our Resource Guide. We have a category for Diet/Nutrition in there. If that doesn’t help you, I would contact your pediatrician, he or she may have some recommendations for you.http://www.autismspeaks.org/resource-guide
3:09
Be sure to consult with your pediatrician, this is a medical issue that requires a team approach.
3:09
Comment From Jack Dawson

Hi There! I was wondering when the Family Support Tool Kits are being released? Your Tool Kits have SAVED my family!

3:11
Jack we’re SO happy to hear our Tool Kits have been helpful to you! That’s what we’re here for!
3:12
Hi Jack- Family Services relased A Granparent’s Guide to Autism last week. We will release Parents, Sibllings and Freinds in the next few weeks.The Tool Kits are specially designed to help with the emotional and support reactions to having a child diagnosised with autism.
3:13
All of the Family Services Too kits can be found at;
http://www.autismspeaks.org/family-services 
3:13
Comment From meta kane

I need a school for my son who has autism. My son has a photographic memory.

3:17
Hi Meta: You can look in our Resource guide for Private Schools. If you are interested in public school, that is something you will have to work with your IEP team in making an determination of public schools that are available.
http://www.autismspeaks.org/resource-guide 
3:17
Comment From Dana

I’m wondering if there is a Dallas-area toolkit for the Dental community? Or if there is a group specializing in the ASD population? My stepdaughter has Asperger’s Syndrome.

3:17
Hi Dana! We have a great Dental Tool Kit on our website. It has information and helpful tips for families AND dentists. It also has helpful videos. You can see our Dental guide here:http://www.autismspeaks.org/family-services/tool-kits/dental-tool-kit.
3:18
We also have dentists in our Resource Guide that specialize in treating individuals with special needs including autism. Click on your state, then the category Dentists and you can search by your zip code. I hope you find a great one!www.autismspeaks.org/family-services/resource-guide
3:19
Comment From Mari

I live in California and my son is a Jr. in high school. He has not been able to pass the Ca exit exam. What happens next? We would love for him graduate with a diploma and not a certficate.

3:21
Hi Mari- I am going to recommend you request a Transition Tool Kit – a special kit for families whose child are transitioning into adulthood. http://www.autismspeaks.org/family-services 
As far as your son not passing the exit exam, I would recommend you call an IEP meeting in order to specifically address this issue. Our IEP guideline will be a great resource to check out. http://www.autismspeaks.org/family-services 
3:22
Comment From Jennifer

My 4 year old was diagnosed with Autism and is in a special needs pre-k. I”m trying to find help with the state laws that are associated with Special Needs Classes. Regarding class sizes, full days/ half days…ect…

3:22
Hi Jennifer! We have lots of information about eduation laws in our IEP Guide. You can read our IEP Guide that was written by a professional team of lawyers on our Your Child’s Rights page:http://www.autismspeaks.org/what-autism/your-childs-rights. You can also search our Resource Guide for other preschools in your area. www.autismspeaks.org/resource-guide
3:22
Comment From Dana

Your IEP guide is invaluable! We did our first IEP last week, and knew how to advocate for our daughter with Aspergers. Thanks to your site, we were able to include both speech therapy *and* counseling in her IEP, as well as ensuring her caregivers had Autism certifications.

3:23
Thanks Dana! I’m so happy that was helpful to you and your family. We have gotten some great feedback!
3:24
Comment From Mari

Do you anything about a waiver in Ca?

3:25
HI Mari, you can check with your Regional Center. They should be helpful about how to obtain a MediCal waiver. Its great that you are investigating a waiver while your son is making his transition to Adulthood.
3:25
Comment From Catherine Ritter

My family needs a good counselor for helping us cope with our eleven year olds AS/OCD. It has been extremely difficult dealing with the anxiety meltdowns that turn violent and destructive. He has a good pshychologist already. Our eight and four year are having a hard time with their brothers behaviors. It is really bad and we are looking into temporary placement outside of our home for him. It is hard to find doctors who can counsel in relations to the spectrum. Any suggestions?

3:27
Hi Catherine. I suggest you look to you discuss this with your pediatrician to see if he/she can make a referral to a counselor. You can also search our Resource Guide for psychologists/other professionals in your area who may be able to help.www.autismspeaks.org/family-services/resource-guide. It is important to make sure this counselor has experience with autism. But those are 2 great places to start!
3:28
Keep an eye out for a Sibling Tool Kit we are working on that will come out in October. We also have books for Siblings in our Resource Library which you can see here:http://www.autismspeaks.org/family-services/resource-library/books#siblings
3:30
For those of you making comments about issues at school or education-related problems, definitely check out our IEP guide here http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:30
Parent involvement is very important in the IEP process and your child’s education. Make sure you advocate for your child’s rights even though the process may be difficult!
3:31
Comment From Thereasa

My 6yo daughter was recently diagnosed with Aspergers. Do you have information that is easy to explain to my family so they understand what that means? They tend to be rather anti psychobabble and will not accept this diagnosis.

3:32
Hi Thereasa! First off, I suggest you order our Asperger Syndrome/High-Functionig Autism Tool Kit, which we send out for free to families of recently diagnosed children.http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:33
We have family tool kits coming out, but it is normal for different family members to respond differently to the diagnosis. It can take some people longer than others to accept it. I suggest you point families to our website www.autismspeaks.org/what-autismfor information. We’ve suggested that better understanding can lead to more support for you and your family.
3:33
Comment From Catherine Ritter

Our pediatrician does not know of one. I already spoke with him last week. ?? I feel so overwhelmed and stressed, because my family is struggling.

3:34
Catherine, I am so sorry to hear you are struggling. Feel free to call our Autism Response Team at 888-AUTISM2 or email us at familyservices@autismspeaks.org so we can help you.
3:35
It may help you to connect with other parents either through support groups or your child’s school. We don’t want you to feel alone. Sharing your feelings with others going through similar times can be extremely helpful.
3:35
Comment From Mari

Thank you soo much for all the help! Have a Wonderful Day!

3:35
Thanks Mari, we are so happy to help! Hope to see you back next week!
3:36
Comment From Willmom

We have noticed that our 4 year old ASD son is becoming much more stubborn. He is melting down with every no any suggestions?

3:37
Hello Willmom – I am glad you are asking tis question. Its important to understand and have a plan of action when children are having new behaviors.
3:39
You will want to work with a professional, preferably a behavior analyst who is an expert on understating behavior
3:40
http://www.autismspeaks.org/resource-guide 
Our resource guide has a catogory called ABA, take a look!
3:41
Comment From michelle

when our son was that age willmom, we found previewing situations that would have no answers helped. such as we are going to the grocery and there will be things that I am going to say no to. you can get 1 thing, if you do not melt down. (of course all of this is in 4 yr old language) it helped some. didn’t get rid of all them..still had some store meltdowns

3:42
Thank you Michelle! It is so nice to see moms and other parents talking to each other and sharing stories. That is one of the best ways to get support, by sharing information with others who may be going through similar experiences. As many of you know, there are constant chats happening on our Facebook page and lots of parents have been able to connect and help each other!
3:43
Comment From Willmom

Also, our 4 year old son (ASD) is having a very hard time with potty training. Any suggestions?

3:43
Comment From Willmom

Thanks for suggestions

3:43
Comment From Willmom

Michelle, Thanks for reaching out!

3:44
Hi Willmom. There are 2 books that have been submitted to our Resource Library that have been helpful to families who are having difficulty with potty training. Here are the 2 links:
3:44
Comment From Jeni

Willmom – the Book Love and Logic help my family tremendously in dealing with my son’s tantrums when he was your son’s age. We also had a 1:1 ABA therapist that would go to the store with us and help guide me through the situation.

3:45
The Autism Treatment Network is working on a toilet training tool kit that they hope to have out soon. So keep checking back to our Family Services page for its release date!www.autismspeaks.org/family-services
3:47
Comment From Ashley

I was just wondering if there has been any link in genetic disorders and autism? I’m asking because I have two boys who have mutated “X” chromosomes, and as a result they have “symptoms of autism” they cannot say for sure that’s what it is, but that’s what everyone thinks it is. It was passed on to them through me (I have the exact same genetic make-up) and I am afraid my daughter will have to too (already had her tested, just waiting for the test results). Thanks for your time!

3:48
Hi Ashley! That is a great question, but I’m sure you would get a better answer from our Science team. You may want to check out Alycia Halladay’s live chat on siblings and genetics here:http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:49
Our science team would be happy to answer your questions atscienc@autismspeaks.org. They are very helpful!
3:50
or you can try research@autismspeaks.org for more specific research-related questions.
3:51
Comment From Gayle

My grandson lives in NC and has been diagnosed as being on the autism spectrum, adhd and I’m not sure of anything else. He takes medications that are costly and also sees a psychologist for dealing with anger issues. He is 7 years old and does well in school and most of his meltdowns are at home. His parents are separated and my daughter is the sole source of financial support. Are you aware of any no- or low-cost services in NC to assist with his medical costs? My daughter has health insurance but the psychologist specializing in children with autism is out of network and the insurance pays very little. My daughter has to pay more than $135/week for the therapy session and his meds are not in the range of what she can afford. Thank you for any assistance you can provide.

3:53
Hi Gayle: You are correct to investigate financial recourses for families. Is your grandson receiving a Home and Community Based waiver? If not, this is the first step you want to take.
3:55
There are so many stressors that family’s face, and financial issues are one of the primary ones that we see in families of children with special needs. There are potential sources of aid…. many of them depend on the state in which you’re living. Many of the services in some of the states are provided for through state agencies.
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance. Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:56
Comment From Guest

hi, i have an 8 year old boy, who has asd and adhd. We have just had our 6 year old duaghter accepted to be screened for autism. shes very intellegent and we feel shows signs of adhd and ocd too. she saves up all her anger, and behaviours for us at home, and we are told, does as she is asked in school! soo frustrating! ive read alot about high functioning girls disgusing their behaviours etc in school, then letting all come out at home.

3:58
Hi guest! This is a very common problem reported by parents. We recommend that there by close communication between you and the teacher so you can learn about what the school is doing to get the success they have. Communication is everything when trying to raise a child who may have autism. Remember, this won’t be easy because the school environment is so structured, but it does help to have this information so you can learn from their success.
3:58
These issues should also be brought up in the IEP team meeting. The teachers/school professionals should have lots of information for you. It is great when teachers and parents are on the same page.
3:59
Thank you everyone for joining us today!! We weren’t able to answer everyone’s questions but I hope all of the participants learned a lot from the questions that we did answer. As always, feel free to call our ART team with questions at 888-AUTISM2. See you next week!!

Has anyone studied how to help toilet-train children with ASD?

September 23, 2011 45 comments

This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center

and

 Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.

Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success.  Here are some important points:

Toileting Challenges with ASD:
* Physical:  Talk with your doctor about medical reasons that may make toileting more difficult for your child.  These can include constipation, and kidney, urinary tract, or bladder problems.
* Language:  Language delay can make it difficult for a child to ask to use the toilet.  Children may need other methods to communicate their needs.
* Fears:  Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness:  Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets:  Your child may have difficulty toileting in new places—such as school vs. home.

Tips for Parents:
Sit for six:  Set a goal for six toilet sits per day.  Start out slow.  First trips may only last 5 seconds.  Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell:  Take your child to the toilet and tell them it is time to go.  Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead:  Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip.  Talk with other people who work with your child.  Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet.  Be matter-of-fact when accidents happen.
Consider comfort:  Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.

These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.

Please remember: Toileting can be difficult for children with an ASD.  One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.

The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.

$12M in Funding for Research and Treatment!

September 21, 2011 3 comments

Autism Speaks’ Autism Treatment Network (ATN) has competed successfully for another round of federal funding—$12 million—to continue to serve as the Autism Intervention Research Network on Physical Health (AIR-P). Read more in science news at autismspeaks.org

New Blood Work Tool Kit for Families and Practitioners

September 20, 2011 9 comments

Posted by pediatric neuropsychologist Cassandra Newsom, PsyD, director of psychological education for the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) of Vanderbilt University Medical Center (Nashville, Tennessee), a member of Autism Speaks’ Autism Treatment Network.

On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.

For these reasons, our team wanted to pool our knowledge about pediatric pain management—particularly techniques proven to help calm children with ASD. We wanted to improve everyone’s experience—that of the child, parents, and healthcare providers. And, so, we set about developing two of this month’s new ATN tool kits: “Take the Work Out of Blood Work: Helping Your Child with ASD” and “Take the Work Out of Blood Work: Helping Your Patient with ASD

To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.

The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!

The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.

Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.

We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at atn@autismspeaks.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.

The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.

ADHD Symptoms in Children with Autism

September 19, 2011 34 comments

 The symptoms of attention deficit and hyperactivity disorder (ADHD) create significant problems for over half of all children with autism and may be both under-recognized and under-treated by pediatricians. These findings—from Autism Speaks’ Autism Treatment Network (ATN)—were presented Sunday at The Society for Developmental and Behavioral Pediatrics annual conference, in San Antonio, Texas. For more information see our news item here

Autism Treatment Network LIVE Chat with Dan Coury, MD and Nancy Jones, PhD Transcript

September 15, 2011 6 comments
On September 14, Dan Coury, MD, the medical director of Autism Speaks’ Autism Treatment Network (ATN) and Nancy Jones, Ph.D., the ATN Program Director hosted a webchat, answering questions related to the release of the new ATN tool kits, “Medication Decision Aid Tool Kit” and “Blood Draw Tool Kit.”
We would love to hear your feedback! What did you think of the chat? Were your questions answered? Do you have any additional comments or questions you would like to add?
12:51
Hi Everybody,Welcome to another Autism Speaks science webchat. Today we’re pleased to have two hosts to field your questions:Dan Coury, MD, is the medical director of Autism Speaks’ Autism Treatment Network (ATN), a system of 17 advanced autism treatment centers across North America, where children and adolescents receive integrated care that includes treatment for associated medical conditions such as sleep disturbances and gastrointestinal issues. As a developmental-behavioral pediatrician, Dr. Coury has cared for children and adolescents with developmental disorders including autism for more than 25 years at Nationwide Children’s Hospital, in Columbus, Ohio. Dr. Coury is also a professor of pediatrics and psychiatry at Ohio State University.Dr. Coury will be fielding your medical questions related to the release of the ATN new toolkits: “Autism: Should My Child Take Medicine for Challenging Behavior?” and “Taking the Work Out of Blood Work: Helping Your Child with ASD.”With Dr. Coury today is ATN Program Director Nancy Jones, PhD. Dr. Jones can answer more general questions about the ATN and its member clinics.
DISCLAIMER: The responses in this webchat are not to be construed as medical advice or treatment, nor should they take the place of individualized medical consultation with your or your child’s doctors and other healthcare providers.
12:54
Comment From Danielle Smith

My son was recently diagnosed with ASD and the dr has him on focalin 2.5mg but it doesnt seem to work and since there really is no medication for autism is it wise for me to keep him on this medicine

12:56
Dr. Coury here. It depends on what the goal was for the Focalin. If it is to improve attention or overactive symptoms, it may be either too low a dose or simply not helpful as you describe. You should discuss options with your doctor at this point. Other medicines might be more helpful.
12:57
Comment From Lisa

My son has been prescribed Tenex at 1/2 mg every night, seems to help take the edge off of him & make him alot happier. any opinion on this new drug?

12:58
Dr. Coury here. Tenex has been used off-label for many years for children with autism to treat different symptoms. It has been shown to be effective for attention and overactive symptoms, and some parents report help with sleep issues.
12:58
Comment From Daniella

How early on is autism detected in a child? Are there activities can do to help with their development before school age?

12:58
Daniella, Dr. Jones here. Autism can be detected as early as 16 months and is typically diagnosed at around 3 years. But early signs of autism can be seen earlier than this. You can learn more about the early signs on the Autism Speaks websitehttp://www.autismspeaks.org/what-autism/learn-signs.
12:59
Comment From Nancy

Hi, my name is Nancy and my Grandson has Autism. At bedtime he gets this sudden rush of energy, making it impossible for him to sleep, what do you think about giving a child melatonin?

1:02
Dr. Coury here. Melatonin has been shown to be effective and safe in promoting sleep in individuals with autism disorders. It is worth discussing with your grandchild’s doctor.
1:02
Comment From Scott

My son was Diagnosed at 18 months with ASD. He is now 4 years old and has never been prescribed any medication for his disorder. It has never even been brought up before??

1:02
Dr. Coury here: A great question Scott. Not every person with autism has behavior that requires medication as part of the treatment plan. Your doctor may not have seen a need.
1:05
Comment from Reetta in Montreal:
My 3.5 year old has been taking Valproic for almost two years now. It was originally prescribed because of severe automultilation and suspicion of epilepsy and later continued because with it she sleeps better and is happier during the day. My question: I feel like my daughter is better with this medication but I still constantly question if there is harm in this for her. How do you advice parents in these situations? Why do we question so much more the medication taken for behavior then for example the 2 other meds my daughter takes for her digestive system? I could use any words of wisdom.
Thank you.
1:06
Dr. Coury’s here: I think it is a good idea to review the medications that your child takes at least on an annual basis. Why is my child taking this, is it doing what it is meant to do, are we on the proper dose? If things are going well, the tendency is to continue the medication because of the good that is seen. However, sometimes problem behaviors fade away and don’t necessarily come back. One option to consider is gradually weaning your child from the medication over a long period of time – many months to a year. Also, if the dose has not changed over the past two years it is possible that your child has outgrown the dose and is already “weaning” herself because she is receiving a sub-optimal dose. Your child does mature and acquire positive behaviors – sleeping better, better mood – through activities and treatments in addition to medicine.I think parents question medicine for behavior more than for other reasons – digestive, etc – because parents feel that their child’s behavior is a result of something the parents are doing wrong. I think when parents consider all the possible reasons for their child’s behavior and determine that it is not due to parenting actions, those parents feel more comfortable that medication is part of the overall treatment plan.
1:07
Dr. Coury here. Ritalin and other medicines used for ADHD such as Strattera, Focalin and Adderall can be helpful in treating attention and hyperactive/impulsive symptoms. The dosage varies according to each child, but the dosages you describe here are fairly typical. These options are worth discussing with your doctor if these are challenging behaviors for your child.
1:07
Comment From Guest

How do you feel about Ritalin (10 mg daily, 5mg morning and 5 mg afternoon) for a 4.5 year old (will be 5 Jan. 1st)? He has been diagnosed with PDD-NOS, Apraxia, ADHD, and behavioral issues. I give him fish oil too, would like more info on dosage for fish oil. Thanks.

1:09
Comment From Guest

My son is 10, severe autism, and nonverbal. Sometimes he cries for no apparent reason…and then he tends to get angry and grabbing everything and controlling what everyone does and where everything is “located” He is on risperidone (new) .25 mg at night…he has been using prozac for major anxiety and valproic acid for seizures. We also use melatonin at night to help sleep.

1:11
Dr. Coury here. Risperidone is FDA approved to treat “irritability” seen with autism – the moodiness, difficulty transitioning and angry / aggressive behaviors that accompany that difficulty. It can be very helpful. The prozac, valproic acid and melatonin are all medicines that are commonly used to manage the target symptoms / behaviors you describe.
1:12
Comment From Jessie

My son was diagnosed at 2 and is now 4. He has autism, ADHD and Epilepsy. Should he be on medication for this and how do these all fit together?

1:13
Dr. Coury here. The Autism Speaks ATN Medication Decision Aid is designed to help families make this decision. Not every person with autism requires medication. There are several factors to consider.
1:14
Comment From Nancy

could you explain what PDD-Nos is?

1:14
To Nancy, Dr. Jones here. PDD-NOS is one of the diagnoses that are part of the group of disorders called Autism Spectrum Disorders (ASD). You can also find more information about diagnosis at http://www.autismspeaks.org/what-autism/diagnosis, which has a link to frequently asked questions. PDD-NOS is typically given to children who may have social impairments associated with autism but not necessarily both the language and repetitive behaviors and may have more mild symptoms
1:14
Comment From Melanie

My son is 6 and his anxiety has increased dramatically. His Dr is recommending prozac. I am hesitant because he is so young and I feel all the correct supports are not in place yet. However, he has started eloping and I am scare he is going to hurt himself. When do you finally decide to take that next step?

1:17
Dr. Coury here. Melanie, you are considering all the right factors. The Autism Speaks ATN Medication Decision Aid is intended to help families sort out these issues, identify what needs to be discussed further with your physician, and come to a decision that you are comfortable with. Be sure to identify clearly what the target behaviors are for the medicine that is being recommended.
1:17
Comment From Kevin

My son has Asperger’s and although my daughter has not been formally diagnosed yet, we suspect she does too. She is 10 and suffers from extreme social anxiety and is starting to show signs of depression. We are considering medication for her anxiety/depression. Can you comment on specific medications that work for children with Asperger’s? Do the potential benefits in using anti-anxiety medication outweigh the potential side effects?

1:19
Dr. Coury here. The usual anxiety medications such as zoloft, prozac and celexa have all been used to treat anxiety in individuals with autism. They can be effective, although it seems they are less effective than in typically developing individuals. For most cases the potential benefits outweigh the potential sideeffects.The ATN Medication Decision Aid can help guide you through the questions to discuss with your doctor in coming to a decision on this.
1:20
Comment From Lucy Maldonado

Why there’s Doctors that don’t beleive in the diagnosis of ASD given from my son’s Neurologist just because he is too young (yrs)?? And he was denied for Wrap around services because of that?? SOmetime I feel very diaspointed. But now we just did the grievance

1:20
Comment From Marissa

My 21 year old son has never needed medication for his autism, however, he has been experiencing behavior that likely needs medical intervention (very stimulated/over-stimulated, has displayed SIB and aggressed at others, can’t attend, hyper, etc.). This behavior is episodic in nature and he has extended periods of calm, happy behavior which used to be is typical disposition. Dr. is recommending using risperdol as a PRN due to the episodic nature of the behavior. Does this sound correct? Should we be looking into other meds or daily meds?

1:21
To Lucy Maldonado, Dr. Jones here. Autism Speaks Family services has Autism Response Team (ART) members who can help with questions about local services. They are specially trained to connect families with information, resources and opportunities.Call them at 888-AUTISM 2 (288-4762) or email at familyservices@autismspeaks.org.
1:23
Dr. Coury here: Marissa, the ATN Medication Decision Aid can help guide you through this decision process. An important part of your decision is the episodic nature of your son’s problems, and determining how much of a problem this behavior poses to him. Medicines such as risperdal are not usually used as PRN or “as needed”. More detailed discussion with your doctor may suggest other potential medicine options.
1:24
Comment From Gina

My daughter has selective mutism. Is there a med . for this?

1:25
Dr. Coury here: Gina, there is no specific medicine for selective mutism. This is generally thought to be related to anxiety disorders, and the anxiety medicines such as zoloft and prozac have been used to treat this in individuals who otherwise are developing normally.
1:28
Comment From Barbara

Are there really any vitamins or supplements that Autistic children need? My grandson eats no vegetables or fruit and has sensory issues.

1:31
To Barbara, Dr. Jones here. I am sharing with you an article from some of our ATN clinicians on frequently asked questions about nutritional needs of children with ASD.http://www.autismspeaks.org/sites/default/files/documents/airperspectives_newsletter_layout_final_lr.pdf(page 7)Nutritional needs are very individual especially if you grandson has eating preferences. You and your family can work with your clinician or a registered dietician to determine your grandson’s specifc needs. You can find information here: www.eatright.org “Find a Registered Dietician”
1:31
Comment From Jill

Are there any medications that are actually FDA approved in treating children under 10 years old? I have seen children as young as 5 years old on up to 5 or 6 different psych meds. Does not sound very safe. Is this common practice?

1:32
Dr. Coury here. Jill, there are many medications FDA approved to treat common symptoms seen in autism that are approved down to age 6. These include the usual ADHD medicines as well as risperidone and abilify. The use of multiple medicines is common, as doctors try to find the right medicine to treat the person’s symptoms or target behaviors and most medicines don’t treat all of these challenging behaviors. In general most physicians try hard to avoid medicine in children under 5, and always try to avoid multiple medicines. The ATN Medication Decision Aid can help keep parents and doctors on track in choosing medicines and whether to keep on more than one medicine.
1:35
Comment from Louise
My son, 12 yrs, on abilify. It helps a little but still the dose is probably not high enough. I’m nervous abt increasing it. We have tried him on and off various meds and NOT being on something is not an option. Behaviors not just challenging..can be dangerous. AT A LOSS OF WHAT TO DO!
1:36
Dr. Coury here: Finding the right medicine at the right dose can be frustrating, and often takes time. It is a good idea to be cautious about simply increasing a dose without considering alternative approaches. Among the factors to consider: Have other medicines besides Abilify been tried? If not, and your child is near or at maximum dosage, a switch to another medication may be in order. Other medicines from a similar class of drugs or a different class of drugs may need to be considered. Reviewing the target symptoms or behaviors can help with this problem solving. It is also important to be certain whether the problem being addressed is one that can be treated with medicine, or whether it requires more of a behavioral approach. It may be that a combination of medication and behavioral management is what is needed.
1:36
Comment From Teresa

One of my autistic children is on 4 different meds. Some of these are epilepsy meds. Is that normal or common to give autistic children those types of meds? Also, our doctor told us to not feed our children anything with preservatives in it-to grow our own food and freeze it. Will that really help?

1:37
Dr. Coury here. Teresa, some epilepsy medicines such as valproic acid and carbamazepine are also approved to treat bipolar disorder. These medicines are referred to as mood stabilizers. The mood swings and outbursts seen in some people with autism lead doctors to prescribe these medicines, and they can be helfpul. There is more and more good research coming out regarding food dyes and preservatives, and limiting them is probably a good idea, but everything in moderation. It may not be feasible for you to grow all your own food, etc.
1:39
Comment From debra

Are the risks worth the results in autitic children with anger behaviour issues?

1:39
Dr. Coury here: Debra, your question is an important one in deciding whether to use medicine to help wiht challenging behaviors. The ATN Medication Decision Aid can help guide you through this decision process, and most especially ask your doctor the right questions.
1:43
Comment from Yvonne
My 9 year old son is high functioning with ASD and PDDNOS. He dislikes the doctors office and is terrified of any shots or needles. I totally understand since it takes 2 people to hold him down for shots and 3 people to attempt to draw blood. What could you recommend since he is coming up on his year check up that does require shots and they will also want a blood test completed. Any help would be greatly appreciated.
1:44
Dr. Jones’s here … There are many things you can do to help you and your son prepare for blood draws. Detailed ideas are discussed in our blood work toolkit, which you can download at here. It also provides practical examples and sample visual supports you can print out and use for your visit.Key things highlighted in the toolkit are: 1) preparing for the visit; 2) learning and practicing relaxation and distraction techniques; 3) using visual supports and social stories to help your child prepare for the visit. It can be helpful to practice the techniques at home before your visit. Another key part of preparing for and managing a visit is working with the local clinic staff. Since your son has an annual visit coming up, we’d recommend you communicate with your nurse or healthcare provider in advance of the visit and discuss your concerns. The blood work toolkit is available in a version for your healthcare professional. It can be helpful to share this with your healthcare team and discuss the information with them before your next visit. You can work with them to be sure they have any pain management or other supplies available and that they can help with relaxation techniques.
1:45
Comment From Guest

How long do you recommend in trying a treatment before introducing another varialbe?

1:45
Dr. Coury here; How long to wait before introducing another variable depends on the previous varialbe or medicine. For some medicines, a change can be done within a few days; for other medicines it may be several weeks before you and your doctor have seen all of the potential benefit of a medicine or other treatment. Your doctor should be able to describe this timeline when a medicine is started.
1:47
Comment From Peggy

My son is 10, and is high function,and is ADHD, is on no meds. But has major anxiety, poor social skills, has hard time with comprehension, along with sound sensitive. He has Med-i-cal . I am in need of help, he is just enough “normal” not to get into Inland Reginal Center (state funded) can you recommend anything to help me out?

1:48
To Peggy, Dr. Jones here. I would also suggest you contact our Autism Speaks Family services Autism Response Team (ART) members. They can help with questions about local services. They are specially trained to connect families with information, resources and opportunities.Call them at 888-AUTISM 2 (288-4762) or email atfamilyservices@autismspeaks.org.We also have a searchable database of resources. It is searchable by state:http://www.autismspeaks.org/community/fsdb/search.php I am not sure you are in the greater LA area but you can also contact our ATN center at CHLA for help with regional services:Children’s Hospital of Los Angeles (Los Angeles, CA)
Contact: Kathryn Smith
Phone: (323) 361-6102
1:49
Comment From Joanne

Is there a chance that stimming behavior will improve with age? Is there anything that can be done to help control or lessen them?

1:51
Dr. Coury here: Joanne, there are medicines that can help reduce stimming behavior. Behavioral interventions are also helpful. The ATN Medication Decision Aid can help you make the decision whether to consider medicine or not. Generally medicine will not make these behaviors disappear without behavioral intervention accompanying them.
1:53
Comment From joanne

I had my son on melatonin and it never worked, is there another drug i can get to help him sleep.

1:55
Dr. Coury here: Joanne, there are a variety of medicines that are used to help promote sleep in children and adolescents with autism. There is some research to support using clonidine. There are many others that are also tried, which suggests that we really don’t have a perfect answer for this problem.
1:58
Comment From Sarah

Hi Dr. Coury, My son is 14, (diagnosed at age 3 with autistic disorder), he started taking risperidone over the summer for irritability. It is helping, but his appetite is crazy, and he has really put on a lot of weight. Is there any evidence that anything could help this, like omega 3s?

1:58
Dr. Coury here: Sarah, increased appetite and accompanying weight gain is one of the significant side effects of risperdal. We usually recommend a good activity plan and strategies to decrease access to food. The Autism Speaks ATN is starting a new research study examining the use of a medication to help reduce appetite and weight gain from medicines like this.
2:00
Comment From dee

my grandson has autism and his eating habits are very poor..school recommends putting him on antidepressants…will this help him

2:00
Dr. Coury here: Dee, it depends on what the school and your childs doctor thinks is causing the poor appetite. If your child is depressed, it could help. However, many antidepressants can cause decreased appetite and may make things worse. This one requires good discussion with your doctor.
2:00
Thanks everyone for GREAT questions. Forgive us that we could not get to all of them.We’ll try to answer more on the “Got Questions?” section of our Science Blog. And we’ll be back with more webchats and more ATN toolkits in the coming months. Meanwhile, look for the full transcript of this webchat in tomorrow’s science blog.Here are the links:http://blog.autismspeaks.org/category/science/http://blog.autismspeaks.org/category/science/got-questions/

ATN Clinician Presents Webinar

September 14, 2011 1 comment

Autism Spectrum Disorders Webinar  
  September 19, 2011 from 1 to 1:45pm (ET)

The American Academy of Pediatrics Pediatric Care Online is hosting a FREE webinar on autism spectrum disorders (ASD). This webinar will be presented by Autism Speaks Autism Treatment Network (ATN) clinician Patricia Manning-Courtney, MD, FAAP, associate professor of clinical pediatrics, pediatric developmental specialist, and medical director of The Kelly O’Leary Center for Autism Spectrum Disorders, our ATN site at the  Cincinnati Children’s Hospital Medical Center.

Children with ASD are being recognized and diagnosed in increasing numbers. Early identification and treatment is key to maximizing outcome. Parents of children with ASD benefit tremendously from an informed and supportive Primary Care Provider. This webinar will focus on:

  • Screening and diagnosis recommendations
  • Overview of treatment approaches, including medication
  • Review of current controversies

To view the webinar on Monday, September 19, please use the following URL and password:

Additional information and resources related to autism can be found on the Autism Information page of the National Center for Medical Home Implementation Web site.

Join Our Webchat with Dr. Coury: Should My Child Take Medicine for Challenging Behavior? What Can Help My Child Stay Calm during Routine Blood Work?

September 12, 2011 4 comments

Please join us Wednesday, Sept. 14 at 1 pm Eastern/10 am Pacific, for a live webchat with Dan Coury, MD, medical director of Autism Speaks’ Autism Treatment Network (ATN) and chief of developmental and behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio. Dr. Coury will be answering questions related to the release of the ATN’s first two toolkits for parents and healthcare providers:

* “Should My Child Take Medicine for Challenging Behavior?” is a family decision aid that can help you work with your child’s healthcare provider to choose a treatment that matches your needs and values.

* “Taking the Work Out of Blood Work” is an aide for parents and healthcare providers who want to ease the process of routine blood work for children with autism.

You can download both of these toolkits here; and send us webchat questions in advance at sciencechat@autismspeaks.org. Thanks and chat with you soon… 

Follow

Get every new post delivered to your Inbox.

Join 1,048 other followers

%d bloggers like this: