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Posts Tagged ‘Nancy Jones’

Dr. Beth Ann Malow, MD, Sleep Chat Transcript

February 21, 2012 6 comments

12:50
Hi Everyone! We are going to begin in about 10 minutes!
12:53
Thank you SO much for joining us. After the chat, we’ll be posting the transcript on the Autism Speaks science blog:http://blog.autismspeaks.org/category/science/
12:55
Comment From Kristie Vick

thank you for this!
12:57
Our hosts today are Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, and ATN Program Director Nancy Jones, Ph.D.,
12:58
Comment From Ana

Is there any thing like maybe a foutain or something with nature sounds that can help them to sleep?
12:58
Hi Ana, This is Dr. Malow. Great question. I often recommend white noise machines or sounds of nature as they can help adults and children on the spectrum go to sleep. It works by distracting people so they don’t focus on not sleeping. A fan can also be effective.
1:01
Comment From myra

hi, my daugter age 10 has always had her days and nights flipped, recently her MT suggested melatonin ,her family doctor ok’d it to try and it does work wonders for her. My question though is this – I worry about long term use and are there other methods to help her besides melatonin? And yes we tried baths, lavender, rubbing, and most of all the other normal sleep helps? thank you.
1:02
Hi Myra– This is Dr. Malow. I am glad the melatonin is working. It is generally safe long term, although I would recommend that you look at our Sleep Booklet (you can find a link here) which has basic sleep tips for children with autism spectrum disorders. You may find some strategies there that help your child sleep.
1:06
Comment From Lise

I have a daughter who has been diagnosed with sleep apnea. We have a lot of trouble getting her to use her CPAP machine regularly. Any suggestions? She is thirteen, verbal and is not quite high functioning, but does well overall.
1:07
CPAP treatment for sleep apnea really works and the good news is that you will likely see lots of benefits once Lise is using the machine regularly, including sleeping soundly at night and being more alert during the day. To get used to CPAP, a respiratory therapist or sleep technologist can be key to success. They can help you and Lise get acclimated to the machine. I would ask your sleep specialist who diagnosed Lise if there is anyone at the sleep center who could help with this.
1:07
Hi all,
You won’t see questions post until they are selected to be answered. We’ll try to get to as many as we can. Thanks.
1:08
Comment From marie fauth

do you know what are the scientific research about sleep disorders and autism ?
1:10
Dear Marie– There is a lot of exciting scientific research going on about sleep disorders and autism! We are looking at medical causes that interfere with sleep, such as GI issues and anxiety, as well as brain chemicals that affect sleep, such as melatonin. We are also looking at issues specific to those with autism– increased sensitivities to noise and touch, difficulty understanding parents expectations about sleep. All of these causes can be addressed. Be sure to seek advice from your pediatrician who may likely refer you to a sleep specialist or autism specialist.
1:12
Comment From dee

my 6 yr old as been precribed 3mg melatonin an 3 mg m/r melatonin but it wears of at two so she is a asleep from 7 till 2 its really starting to wear me down as she i have two other children to an non of us are sleeping an i really need some help with it as iv been fighting for two years an all they do is keep changing her sleeping tablets :o(
1:13
Dear Dee– I would ask your pediatrician for a referral to a sleep specialist who is comfortable with children on the spectrum. There are lots of things to try. The first thing I would want to be sure of is that there isn’t a medical reason why your child is waking up at 2– GI issues, breathing problems, etc. Also, there are some behavioral strategies that can be tried to return your child to sleep– some are in the sleep toolkit. The important thing to remember is that there are lots of things to try– you just need to get under the care of someone who is familiar with sleep problems in autism.
1:16
Comment From Sebree

My son is 16 and up until he reached puberty, we had no problems getting him to sleep in his own bed. He now falls asleep on the couch and when we go to bed he ends up on our bedroom floor. He is a very light sleeper and wakes up immediately if we wake up. We give him melatonin, which seems to relax him at first and get him in the sleep zone, but once he wakes up in the middle of the night, he is up all night. Today, we are going to try to get him active outdoors, since he doesn’t do anything physical.
1:17
Dear Sebree– Puberty and adolescence can definitely be a challenging time for sleep! You are absolutely correct to try to increase his daytime activity, as exercise can make a big difference. Also be sure he isn’t using caffeine especially in the afternoon and evening. You might also want to try controlled release melatonin (comes in a pill as the coating is what makes it controlled release– so he will need to be able to swallow pills). We are working on a sleep brochure for teens that will be released in the future.
1:19
Comment From Maritza:
Hi Dr. Malow, Is prolong use of Melantonin harmful? If so, what is best to use. My 18 year old son (preparing to go away to college) averages six to six and a half hours of sleep. Also, if Melantonin is OK to use – What is the best brand? Thanking you, Maritza
1:20
Hi Maritza. This is Dr. Malow. Melatonin is generally not harmful if you use a reputable brand, however, it is important to seek the assistance of a sleep specialist or pediatrician with experience in sleep. This is to be sure that there aren’t any medical issues contributing to difficulty sleeping. Also, keep in mind that melatonin helps with falling asleep quicker but doesn’t help as much with how many hours of sleep a person gets. We used Natrol brand melatonin in our clinical trial as it was approved by the FDA for this study, although there are other reputable brands out there.
1:20
Comment From Guest

My son is 13 years old and sometimes does not go to sleep for up to 4 days at a time. I have caught him watching tv and playing video games. His school calls and says he is sick he is white as a bed sheet…. What do I need to do?
1:21
This is a great question and several others have asked questions about TV/’video games as well–so I am hopefully addressing lots of others with this question. It is important to realize that TV/video games can be extremely stimulating– not just the content but also the flickering lights, which interfere with our natural levels of melatonin. I recommend turning the TV/video games/phones/etc off at least one hour before bedtime and making sure individuals engage in non-stimulating/relaxing activities before bed. Getting your son to understand this may be challenging– this is where your pediatrician may be able to help. If removing the electronics doesn’t help, ask for a referral to a sleep specialist.
1:22
To all-in addition to the Sleep Toolkit, you can also check out a recent blog on Sleep that provides information about sleep management.Toolkit
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use Blog on sleep management
http://blog.autismspeaks.org/2012/02/17/my-son-has-sleep-problems-what-can-help/
1:23
Comment From Wyayn

I work at a Transition program with students 18-21. We help students with autism learn work, independent living, and post-secondary skills. Many of our students come to school very sleepy. We spend much of our day talking about alerting strategies to help them stay awake. Parents report to us they have difficulty sleeping at night. How would you recommend we work with parents to help them sleep at night so they can be awake during the day and focused on school?
1:24
Dear Wyayn– it is terrific that you want to be proactive with these parents and that they are in close communication with you! I would suggest you set up a workshop where you can bring in a sleep specialist to work with the parents for a day and provide information on how to help their children sleep. You may also want to engage the students in the workshop as well as they will feel empowered and engaged in the process.
1:27
Comment From Amanda

My son is on remeron at night which we switch up tp clonidine I worry about him getting addicted to the point where he won’t sleep without meds So I some times switch he over to melatonin. If he has no meds he with stay with just as much energy as if he just woke up other times the meds make him relaxed but he still stays up till around 2-4am Are theses medx going to be something he has to take forever he is 7 now and has been on and off them since he was 5
1:28
Dear Amanda– Excellent question. I would recommend you go back to basics and work with a child sleep specialist to try to identify the cause of your son’s problems with sleep. See previous answer about the scientific causes of sleep problems in autism– medical, biological, behavioral. Once the cause is identified, the most appropriate treatment can be prescribed rather than just trying a bunch of different meds.
1:29
Comment From Christy Guitard

My daughter is 5 and has autism. She has had sleep problems since a very young age. After trying many methods, her doctor recently started her on clonidine, and we found that 0.15mg (a tab and a half) helps her sleep from about 7:30pm-6am on most nights. Some nights she still awakens around 2 or 3, but these are rare. We have not noticed any side effects and she has been taking this dose for about 4 months now. As she grows, is it likely she will become more tolerant to the drug? Also, are there long term side effects you have seen in kids on the spectrum that take this drug? Thank you!
1:30
Dear Christy- It is great to hear that your daughter is sleeping well on clonidine and not having any side effects. As she gets older, the dose may need to be increased. I have not seen any long term side effects but I have occasionally seen this medication and others to stop working, so I would recommend that you look at the sleep toolkit and start trying those strategies.
1:32
Comment From Elizabeth Mills

We r n the process of getting on with the agency for persons with disability because the JDC has ordered our 17 asperger’s son 2 be place n residencial care 2 help him now get 24 hr help & conseling n the many problem areas he has hopefully before turning 18. Do u have any advice? This is all so new 2 us
1:33
To Elizabeth and others-While the focus on our webchat today is on sleep, the Autism Response Team members from our Family Services department can provide information on services and other resources.
1:34
Every Wednesday at 3pm EST Family Services Office Hours is held! Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
1:35
Comment From Chris

Do you have any strategies on getting a 6 year old to sleep in his own bed? He has always slept with his mother and when we have tried to put him in his bed at night he wakes up immediately and will usually not go back to bed. If he wakes up at night I will try to take him out of the bed so my wife can get some sleep but he will just have a complete meltdown and nobody gets any sleep. He is given melatonin and Zertec, which helps him fall asleep. He will not take any other type of medicine that cannot be hidden in a cup of milk.
1:36
Dear Chris– Lots of parents would like to help their children learn to fall asleep in their own beds so your question is very relevant! If your son can learn to fall asleep on his own, he will likely be able to stay asleep in the middle of the night or be able to go back to sleep easier. To help him learn to fall asleep on his own, I would start by finding a book for your child to read about learning how to sleep in his own bed (there are several out there — “I want to sleep in your bed” by Harriet Ziefert is one) . It helps to start out by having mom sleep in a mattress right next to your son, and then move it a few inches away each night until they are sleeping in separate spaces. Be sure to couple this with a reward program for your son.
1:37
Also, please join us on March 1st at 3pm EST for ‘The Doctors Are In!’ Hosting will be, Head of Medical Research Joseph Horrigan, M.D. and Dr. Jose Polido, a dentist with at the ATN center in Los Angeles!
1:40
Comment From Mel

How can I find a child sleep specialist? (Our pediatrician does not seem to have any recommendation.) It also seems a little excessive for my son’s situation… he is a very restless sleeper and wakes in the morning not feeling rested; but he is not as extreme as others have described, as far as being up for hours. Melatonin helps, but not all night.
1:42
Dear Mel– Below is the info on how to find a accredited sleep center which has pediatric sleep specialists. You can also look at the Autism Treatment Network website as each of these 17 sites across North America has a pediatric sleep specialist with autism experience involved.
1:44
Comment From Helena

Hello, my son is 32 years old and he started having seizures 8 years ago. He has problems falling a sleep. He will lay down but wont be sleep. This can go on for a two til three days then he will have a seizure. Do you have information on a doctor that specializes in adult autism in pennsylvania
1:46
Helena-Dr. Jones here. Our ATN center at University of Pittsburgh, may be able to help find you a recommendation for a doctor in Pennsylvania who works with adults. You can contact them at (412) 235-5412. You can also contact our ART team.
1:47
Comment From Angela

what about adults and children with ADD/ADHD and sleep i am now adult with moderate ADD mild ADHD i struggle sleep since i was baby i have troubles falling asleep my mind wont shut off or stop thinking i would write my problems or thoughts down dont work i take malentonin
1:47
Dear Angela– ADD/ADHD, like autism spectrum disorders, is also associated with sleep problems. Be sure that any medication you are taking for ADD/ADHD isn’t too late in the day when it could be interfering with sleep, and also be sure there isn’t any other sleep problem going on at night, like a breathing problem. Your primary care physician can help with that. Writing your thoughts down is a great strategy– you might also try meditation or other relaxation techniques to help promote sleep.
1:48
Comment From Ana

We are about to move into a new place that has rooms for each of my two children. My son who is a aspie has to sleep with someone at all times or he wakes up and doesnt sleep. We are looking into getting a rescue dog that will maybe sleep with him in the bed, Do you think that this will help? Has there been any study on the dog/pet influence?
1:50
Dear Ana– I don’t know of any studies, but I think that a trained assisted dog is an excellent idea as it may help your son be less anxious at night. Anxiety is a big cause of sleep problems in kids with autism.
1:51
Advance question from Cathy:
Hi, My son is 6 ½ years old and has been diagnosed with ADHD and Asperger’s and shows symptoms of OCD, ODD, Anxiety, Sensory Integration Disorder. He takes a combination of Adderall XR 15mg, Adderall 30 mg, and Intunive 3 mg during the day. His day time hours at school are very good (finally!) but it’s the night time and first thing in the morning I struggle with the most. He has many meltdowns and tantrums, though he’s on a regular diet; blood test results have shown he’s got a higher gliadin level of 38. The medicines wear out of his body by 8:30pm usually, so he’s not on any medications until the next morning when I start his Adderall (XR and regular) again.
Once Daniel’s head hits the pillow, he usually falls asleep within minutes. Problem is, he’s up like 45 minutes later with night terrors. It’s terrifying because he sits in bed and just gives blood-curdling screams. When I go in to see what’s going on, he’ll start hitting, kicking, or punching me. I’ve heard that it’s best to leave him alone, but when I do that, the nightmare seems to last FOREVER. I’m a single working mom and need my sleep as much as he needs his!
What is the best way to handle his meltdowns/tantrums during the off-medicine times? What is the best way to handle his night terrors? Thanks
1:52
Hi Cathy. I would seek a referral to a pediatric sleep specialist as night terrors are very treatable, but must be properly diagnosed. We often will do a sleep study to document night terrors and exclude epileptic seizures. As for the meltdowns/tantrums, I would consult with an autism specialist, keeping in mind that improving sleep may also help these daytime symptoms.
1:52
Comment From Julie

Just joined, sorry i’m late. My 6 year old son has autism and tends to wake around 5 am. we really struggle getting him back to sleep. He is tired but isn’t understanding it’s still night time and bed time. any suggestions?
1:53
Dear Julie– In trying to help with early morning waking (5 am), it helps to figure out what time bedtime is. If bedtime is 8 am, you may want to see if your son can stay up a little later as that may help him sleep until 6 or 7 am. As he gets older, he may be able to entertain himself when he wakes up early. Kids with autism in general seem to need less sleep, so as long as it isn’t disruptive to the family, I wouldn’t be overly concerned.
1:55
Advance question from Richard
My son has trouble sleeping at night he gets up at least 2 or 3 times a night. But when he gets up he seems to be confused and kind of really knowing where he’s at. And the next morning he doesn’t remember even getting up! I was wondering if this is normal or does he have other issues than just having autism?
1:56
Hi Richard. This is Dr. Malow. I would be suspicious of confusional arousals (a form of sleep disorder similar to night terrors or sleepwalking) or possibly epileptic seizures. Would recommend seeking a referral to a pediatric sleep specialist.
1:57
Comment From Amanda

What is a sleep specialist and how do they identify problems?
1:57
Amanda– A sleep specialist is a physician who has been trained in sleep problems– it can be a neurologist, psychiatrist, pediatrician, or other specialist. Finding a sleep specialist who is trained in autism is challenging, but there are some excellent ones out there. Take a look at the link posted below for the Autism Treatment Network– each site has a pediatric sleep specialist with autism expertise.
1:59
Comment From Lisa

My 4 yr old granddaughter has a terrible time trying to fall asleep. She says shes afraid, she has terrible dreams, and sometimes will still be awake at 1-2am…She even is developing dark circles under her eyes because she isn’t sleeping. We’ve tried various things like bedtime stories, no TV for about 2 hours before bedtime, etc…Any suggestions?
2:00
Dear Lisa– Scary dreams can be really hard on a child! You are doing the right thing to try bedtime stories and limit TV before bedtime. Be sure she isn’t watching stimulating videos even earlier than 2 hours bedtime and that there aren’t any other stressors in her life. If not, you might want to talk with her pediatrician about whether she might have an anxiety disorder, which treatment can really help for.
2:01
Advance question from Lisa:
I have a non-verbal 8 year old son that has autism. He has been on clonidine for years but he still has a hard time staying asleep and he can have some “bad” days if he becomes too tired. Are there any new, safe alternatives that might help keep him asleep without causing him to be drowsy in the morning? He is learning to read, type and doing simple math, but these “bad” days seem interfere with his learning and his therapies, so I would really like to make sure he receives enough rest. Thank you guys for all you do for our children.
2:01
To Colleen-If you are asking about what early signs of autism are, I would suggest you check out our Learn the Signs page:Learn the Signs
http://www.autismspeaks.org/what-autism/learn-signs Info on autism
http://www.autismspeaks.org/what-autism
2:02
Oops. Here’s the answer to the advance question from Lisa…. If he can swallow pills, I would recommend controlled release melatonin. If not, gabapentin may be a good alternative. Be sure that you seek medical advice, however, for a couple of reasons—1. To be sure there isn’t a medical reason (GI issues, etc) for the night wakings and 2. To be sure that whatever medication is chosen isn’t going to interfere with his other treatments. Also, be sure you review our new sleep booklet as we include some tips for night wakings.
2:03
Comment From Linda

I suspect my grandson has autism. Any tips on how to approach my son with this?
2:03
To Linda. Dr. Jones here. We have a Grandparents Guide to Autism you may find useful. The link to this document will follow.You may also find these webpages helpful. They have information on the early sigsns of autism.Learn the Signs
http://www.autismspeaks.org/what-autism/learn-signs Info on autism
http://www.autismspeaks.org/what-autism
2:04
Thank you all SO much for joining us. Sorry we couldn’t get to all your questions.
After the chat, we’ll be posting the transcript on the Autism Speaks science blog: http://blog.autismspeaks.org.
Got more questions? Please join us next Thursday (3 pm ET/noon PT) for “The Doctors are In” webchat with our head of medical research child psychiatrist Joe Horrigan and guest host dentist Jose Polida, who practices with our ATN center at Children’s Hospital Los Angeles.
Categories: Science Tags: , , , , , , , ,

International Conference on Autism in Ireland

January 18, 2012 4 comments

University President James Browne welcomes attendees.

Posted by Simon Wallace, Autism Speaks director of scientific development for Europe

A fine mist was rolling in off the Atlantic as we made our way to the opening session of last week’s International Conference on Autism at the National University of Ireland, in Galway. Autism Speaks partnered with the university and the American Ireland Fund to put together a program that attracted not only researchers and clinicians, but also parents and policy makers. In all, more than 600 delegates attended this productive conference in the beautiful town of Galway, on Ireland’s west coast. The meeting was very much the brainchild of Autism Speaks board member Adrian Jones, a native of Ireland who now works for Goldman Sachs, in New York City. (You can view the full program here.)

Parents and educators joined researchers and physicians.

We received a warm welcome from National University of Ireland President James Browne before spending two days hearing from international experts on advances in clinical practice, early intervention therapies and educational supports. As hoped, the presentations spanned the range of evidence-based practices in the United States and Europe. This included important information coming out of our own Autism Treatment Network (ATN) and other Autism Speaks programs and initiatives.

The morning presenters included Helen McConachie, of Newcastle University, who spoke about early intervention. Gillian Baird, a pediatrician from Guy’s Hospital in London, spoke as the chair of a committee that developed the United Kingdom’s clinical guidelines on referral and diagnosis of children and teenagers with autism. Also presenting was Cathy Lord, of Columbia University. Lord has been centrally involved in the upcoming revision of the Diagnostic and Statistical Manual (DSM), which physicians use to diagnose autism and related disorders. She explained that there would no longer be three separate diagnoses of autism, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). In the future, these will all be included under the unifying diagnosis of autism spectrum disorder (ASD). This is to avoid the persistent inconsistencies in how physicians assign children to one of the three subtypes.

Afternoon workshops included a presentation by our own Vice President for Translational Medicine Rob Ring, who spoke about the latest evidence for clinical use of medications for patients with autism. ATN Program Director Nancy Jones presented on the network’s ongoing work developing best practices and clinical guidelines.

Connie Kasari, of the University of California-Los Angeles, presented the second day’s keynote address, which focused on the large numbers of children with autism who receive services in schools—and the need for more research on the effectiveness of these services. Among the interesting research findings that Kasari described was the insight that young children with autism are more “socially connected” than we previously assumed. Around 20 percent, she explained, enjoy close friendships. Intriguingly, Kasari has observed that this social connectedness drops when schoolchildren with autism go out for recess.

Minister Reilly speaks with reporters.

For me, the highlight of the second day was a presentation by Jamie Reilly, who spoke of the challenges growing up with autism and how he went on to graduate from Ireland’s top-rated university and is now studying for a master’s degree in Belfast. Reilly spoke of the importance of his family—in particular how his “mum” taught him strategies for overcoming many of the difficulties he encountered. He also described how he occasionally continued to make mistakes—for example, saying “good riddance” rather than “goodbye” to one of his teachers at the end of a lesson. With his fantastic sense of humor, Reilly kept us laughing throughout his presentation.

We also heard from Jamie Reilly’s father—James Reilly, a physician and Ireland’s current minister of health. Minister Reilly’s emotional presentation spoke of his pride in his son’s achievements and respect for his wife’s determined efforts to ensure that Jamie had the opportunities he needed. The minister spoke of the need to provide the best evidence-based approaches to help children with autism reach their full potential. He also announced his ministry’s commitment to provide an additional $4 million over the next three years to improve diagnostic and early intervention services. Minister Reilly will also be creating a senior post to coordinate autism-related activities across Ireland’s departments of health and education.

As we wrapped up this fantastic conference, many delegates told us that this was the largest conference ever held at the university and one that stood out in the sheer number of stakeholders from the autism community. We left for our homes and workplaces with the feeling that we are on the “front foot” for the New Year, thanks to what we learned about the latest research and guidelines on evidence-based practices.

Categories: Science, Uncategorized Tags: , , , , , , , , , , , , , , , ,

Your Questions Answered: ATN Toolkits

September 16, 2011 5 comments

Earlier week, Autism Speaks launched two new medical toolkits from its Autism Treatment Network (ATN). (Here’s our related news announcement.) Today, ATN Program Director Nancy Jones, PhD, answers your questions about these important new resources for parents and healthcare providers.

I have heard about the new toolkits but am not sure what they are exactly. How are the medical toolkits different from educational tools like the School Community Toolkit?

Autism Speaks is dedicated to developing resources to help families and individuals with ASD with daily living and healthcare. It does this through various programs including our Family Services department and our Autism Treatment Network (ATN).

All our “toolkits” and “tools” are free resources that families and medical professionals can download from the Autism Speaks website. Each provides information designed to empower families and individuals on the autism spectrum. The many toolkits now available through the Family Services section of the Autism Speaks website are designed to help families and individuals on the autism spectrum manage many of the challenges of daily life. For example, our 100-Day Toolkit guides families through the first hundred days after a child receives a diagnosis of autism spectrum disorder (ASD).

Because of the ATN’s mission—to improve the health and medical care of individuals with autism and their families—the ATN is focused on developing toolkits that focus on health-related issues. This week and over the coming months, the ATN is rolling out a series of these medical toolkits. Our just released medication decision did—“Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their doctor to make decisions that reflect the family’s goals and values for their child.

We’ve also released two versions of our “Taking the Work Out of Blood Work” toolkit—one for parents and one for healthcare providers. Both are filled with information and techniques for managing blood work, including printable materials that can help you prepare your child for a less-stressful, even stress-free, visit. Over the next few months, the ATN will be rolling out more toolkits for parents and healthcare providers. Look for them on the ATN’s “Tools You Can Use” page at the Autism Speaks website. Development of these tools was supported in part by a grant from the Health Resources and Services Administration (HRSA) and was made possible through the Combating Autism Act (CAA).  Please consider supporting the act’s renewal by visiting our

Combating Autism Reauthorization Act Action Center.

How do you select what topics you will develop a toolkit for?  

There are a number of ways that we get ideas for our toolkits. The primary way is direct input from the families and individuals we serve. In addition, ATN clinicians present ideas for topics based on their interactions with families in their clinics and the medical needs they observe. Our aim is that all toolkits respond directly to the needs of our community.

Will these tools be available in other languages?

Yes, most of our tools will become available in languages beyond English, starting with Spanish and French. These versions will come out in the months after each English version is released. Being able to translate these tools is one of the benefits of our HRSA funding. The 100-Day Toolkit is already available in Spanish; call 888-AUTISM2 (888-288-4762) to request a copy from an Autism Response Team coordinator.

If you have suggestions for healthcare tools families need, send us a message at atn@autismspeaks.org. Have more questions about resources? Our Autism Speaks Family Services Team can help! Contact the Autism Response Team (ART) at 888-AUTISM2 (288-4762) or email familyservices@autismspeaks.org.

Categories: Got Questions?, Science, Uncategorized Tags: , , , , , , ,

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/

Categories: Science Tags: , , , , ,

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:

Categories: Science Tags: , , ,
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