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Posts Tagged ‘Autism Treatment Network’

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.

A Trip to the Dentist Can Be a Positive Experience

February 21, 2012 15 comments

Posted by Elizabeth Shick, DDS, MPH, assistant professor at Children’s Hospital Colorado and the University of Colorado School of Dental Medicine, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.

 As a dentist, I can only hope that when I say “open wide,” that’s exactly what the person sitting in my dental chair does. When I see children in my practice, I know I won’t get my wish every time. Many children with autism spectrum disorder (ASD) have difficulty following directions during routine dental cleanings. Nonetheless, I love working with these kids and their families. So I’ve adapted my practice so that everyone involved with these wonderful patients gets the most out of each visit.

A few years ago, for example, I had a visit I will never forget. The family had not one but two sons with autism. My receptionist greeted the family and after consulting with the parents, we decided it would be best for me to see the six year old first, and then see his eight-year-old brother. He came into my small examination room with his mom and immediately began pacing and staring at the floor as if looking for something he had lost. I asked him to sit in the chair. He didn’t respond or look up. It was clear that the bag of tricks I learned in dental school wasn’t going to get him to cooperate.

To coax him into my examination chair, I asked his mom to hold his hand and help steer him into the chair. She continued to hold his hand during the entire visit. I made sure not to rush through with my typical routine. Instead, I showed him the mirror and toothbrush I was going to use and explained to him, each step of the way, what I was going to do next.

After a while, he began to make eye contact with me. He even smiled. He didn’t do everything I asked, and he struggled through certain parts of the appointment, sometimes trying to sit up or jump off the chair. But we got done what we needed to—a dental cleaning, a thorough dental exam, and a fluoride application. Then his dad came in with his older brother, and we did it all again.

During dental school, few students practice treating patients with ASD. For this reason, many dentists may feel uncomfortable when caring for patients with autism, and it can be difficult for families to find a dentist who understands their child’s needs.

I have been fortunate to work with some wonderful autism specialists here at Children’s Hospital Colorado. With support from Autism Speaks’ Autism Treatment Network (ATN), we created Treating Children with Autism Spectrum Disorders: A Tool Kit for Dental Professionals. It is designed to help dental professionals like myself understand autism and work with parents to help make office visits successful. I often use the recommendations in the tool kit in my own practice.

With autism on the rise, it’s becoming more and more important that dental providers—including dental hygienists, dental assistants and even front desk staff—have the most current information about autism and know how to interact with families affected by it. It is our sincere wish that more dentists will be empowered by our tool kit to welcome these children into their practice and help make their visits a positive experience. We hope you will share the new Dentist Tool Kit with your dental care providers. You can download for free, here. Also see Autism Speaks Dental Tool Kit for families, here.

Got Sleep Questions? We’ve Got a Webchat for You

February 21, 2012 6 comments

Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).

Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.

Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.

We hope you’ll join us:

What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.

My son has sleep problems. What can help?

February 17, 2012 55 comments

 Today’s “Got Questions?” response comes from two clinicians in Autism Speaks’ Autism Treatment Network (ATN). Neurologist and sleep specialist Sangeeta Chakravorty, M.D., is director of the pediatric sleep program at the Children’s Hospital of Pittsburgh; and psychologist and sleep educator Terry Katz, Ph.D., of the University of Colorado School of Medicine and co-founder of the Sleep Center at Children’s Hospital Colorado.

First, know that you are not alone! Many children with autism spectrum disorder (ASD) have difficulty falling asleep and staying asleep through the night. So Autism Speaks’ Autism Treatment Network (ATN) clinicians have been studying how to help them sleep better. One result of this research is the Sleep Strategies for Children with Autism: A Parent’s Guide, made possible by the ATN’s participation in the Autism Intervention Research Network on Physical Health (AIR-P). Starting next week (Feb. 21), this tool kit will become available for free download from the ATN’s Tools You Can Use webpage.

Here are some of the tips that we and our patients’ parents have found most helpful:

1. First, ask your child’s doctor to screen for any medical issues that may be interfering with sleep.

2. Prepare your child’s bedroom for sleep: Is the temperature comfortable? Does your child like the sheets, blankets and pajamas? A dark bedroom promotes sleep, but your child may need a night light for comfort. If unavoidable noises present a problem, ear plugs or a white noise machine may help. Keep the bed just for sleeping, not for playtime or time outs. And try to keep the environment consistent: e.g. If you use a night light, leave it on all night.

3. Maintain good daytime sleep habits: Have your child wake up around the same time each morning. Try eliminating daytime naps. Help your child get plenty of exercise and sunlight, but avoid vigorous physical activity within three hours of bedtime. Likewise avoid caffeinated food or drink (chocolate, cola, etc.) in the evening.

4. Prepare for bed: Keep bed time consistent, choosing a time when your child will be tired but not overtired. Develop a calm and consistent bedtime routine. Keep the lights low.

5. Consider using a visual schedule to help your child learn and track the bedtime routine.

6. Teach your child to fall asleep without any help from you. If your child is used to sleeping next to you, substitute pillows or blankets. If you can, leave the room. If this is too difficult, stay in the room without touching—for instance in a chair facing away from your child. Over a week or so, slowly move your chair toward the open door—until you’re sitting outside.

7. Teach your child to stay in bed. Set limits about how many times your child is allowed to get out of bed. Use visual reminders such as one or two bathroom and drink cards per night. Put a sign on the inside of the bedroom door to remind your child to go back to bed. If your child does get out of bed, stay calm and put him or her back to bed with as little talking as possible.

8. Reward your child for sleeping through the night, and remind your child of your expectations. Consider drawing a contract of expectations and rewards. Small rewards are best.

Helping Teens Sleep
Like young children, teens need adequate exercise and sunlight and consistent waking and bed times. However, adolescence brings hormonal changes that can delay the onset of sleepiness until late at night. Unfortunately, many middle and high schools start early! Find out if a later class schedule is an option. In any case, work with your teen to set a good bedtime. And teens who drive need to know NEVER to drive when sleepy.

Helpful steps include having your teen finish homework and turn off computer and TV at least 30 minutes before bed. Keep lights low. A light snack before bed can help growing teens sleep through the night. Finally, it’s probably a good idea to remove electronic devices, including TVs, from the bedroom.

Have more sleep questions? Join us for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, on Feb. 21, from 1 to 2 pm Eastern. Join via the Live Chat tab on left side of our Facebook page

Got more questions? Please send us an email at GotQuestions@autismspeaks.org.

Tummy Troubles: Studying the Relationship Between Autism and Gastrointestinal Disorders

February 6, 2012 54 comments

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

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

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

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

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

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

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

Can vitamins, minerals and other supplements relieve autism symptoms?

February 3, 2012 17 comments

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

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

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

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

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

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

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

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

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

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

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.

How helpful is the casein-gluten-free diet?

November 11, 2011 58 comments

 This week’s answer comes from pediatric gastroenterologist, Kent Williams, MD, of Nationwide Children’s Hospital, in Columbus, Ohio—one of 17 sites in Autism Speaks’ Autism Treatment Network.

Many parents of children with autism spectrum disorders (ASDs) report that behavior improves when their children eat a diet free of the proteins gluten and casein. Gluten is found primarily in wheat, barley and rye; casein, in dairy products. Last year, clinicians within Autism Speaks Autism Treatment Network (ATN) investigated the issue and found insufficient evidence of clear benefit.  We called for clinical studies, and these studies are now underway.

While we’re awaiting the results, it’s reasonable to ask what harm could result from trying a casein-gluten-free diet. Certainly, dietary changes can be worth investigating and trying, and many parents report improvements in behavior.  However, until more clinical studies are completed and more evidence of safety and benefit is available, parents who place their child on a casein-gluten-free diet need to take extra steps to ensure they do so in a safe and reliable manner.

First, when parents decide to try a casein-gluten-free diet for their child, I strongly urge them to consult with a dietary counselor such as a nutritionist or dietician. Although it’s easy to find casein-gluten-free dietary plans on the Internet, few parents—or physicians—have the experience and knowledge to determine whether a child’s diet is providing all the necessary requirements for normal growth and development.  Keep in mind that foods containing gluten and casein are major sources of protein as well as essential vitamins and minerals such as vitamin D, calcium, and zinc.

I recommend that parents bring the nutritionist or dietician a 3- to 5-day dietary history for their child (writing down what was eaten and how much) and have this reviewed to determine whether there is a real risk for nutritional deficiency.  The nutritionist or dietician can then work with the family to add foods or supplements that address potential gaps in nutrition.

After establishing a plan for a safe and complete diet, I encourage parents to set up a reliable way to measure their child’s response to the diet. This should start before the diet is begun, with a list of the specific behaviors that the family would like to see improve. Examples might include angry outbursts, inability to sit quietly during class, problems sleeping at night, or not speaking to others.

Next recruit teachers, therapists, babysitters, and others outside the family to help you objectively monitor these targeted behaviors and verify your perception of changes. If you reach a consensus that improvements are occurring, continuing the diet may be worth the cost and effort.

However, one should still question whether the improvements are due to the removal of all gluten and casein from the diet.  The changes might be due to removal of just one of these proteins. For example, some parents report improvement with a casein-free diet, and others report improvements with gluten-free diets.

In fact, the behavioral changes may be due to dietary changes other than the removal of casein or gluten.  For example, the improvement might be due to the fact that the new diet replaces processed foods high in sugar and fat with healthier foods such as whole grain rice, fruits, and vegetables.

These alternative explanations are important to consider because a strict casein-gluten free diet requires hard work and can be costly.  For example, it may be difficult for your child to eat from the menus in a school cafeteria or restaurant. Birthday parties present another challenge. As a parent, you’ll likely be faced with the task of sending or bringing special meals and treats when your child eats away from home.

Autism Speaks ATN continues to support research and clinical improvement endeavors on nutritional and on gastrointestinal issues associated with autism through the HRSA-funded  Autism Intervention Network for Physical Health.

Have a question? Please email us at gotquestions@autismspeaks.org.  Read more news and perspective on the Autism Speaks science page.


Autism Speaks ATN Registry Enrolls 4,000th Family

October 25, 2011 16 comments


 Posted by Clara Lajonchere, PhD, vice president of clinical programs, Autism Speaks

 

Four years ago, the Autism Speaks Autism Treatment Network (ATN) set out to collect information on the medical concerns of children and adolescents with autism across North America—while delivering the best in evidence-based, comprehensive healthcare and support for these patients and their families.

Through the efforts of hundreds of clinicians across what are now 17 sites, the ATN Registry has now surpassed 4,000 enrolled children. The information gathered from these participating families is providing the global healthcare community with priceless information on the medical conditions often associated with autism spectrum disorders (ASDs) and the best ways to manage them. In particular, such large numbers allow researchers and physicians to better understand and address the great diversity of medical, behavioral, and other quality of life issues associated with autism.

Enrolling our 4,000th family is an important milestone for Autism Speaks, as we continue to expand and support the ATN and its mission of providing the highest quality of comprehensive care by teams of medical professionals who understand ASDs and excel at conducting evidence-based research.

In 2008 and again this year, the ATN earned additional federal funding to operate as the Autism Intervention Research Network on Physical Health (AIR-P)—funding made possible thanks to the passage and recent renewal of the Combating Autism Act. Under the grant, awarded to the Massachusetts General Hospital for Children, the ATN/AIR-P Network continues to develop and conduct research aimed at directly improving the health and well being of children and adolescents with ASDs and other developmental disabilities. Funding is supporting research in areas of highest priority to families and that can have the greatest benefit for children.

As we celebrate the benchmark of the 4,000th enrolled child, we want to again express our deep gratitude for both the commitment of our participant families and the thousands of donors, volunteers, and staff members whose support make this work possible. Thank you for helping us improve the care and respect afforded to all individuals on the autism spectrum.

My child is nonverbal. Anything new that might help him communicate better?

October 14, 2011 30 comments

Today’s “Got Questions?” answer comes from speech-language pathologists Cynthia Green, Kameron Beaulieu, and Jill Dolata (left to right in photo) of the Autism Speaks Autism Treatment Network (ATN). Their ATN work at the Oregon Health & Science University’s Child Development and Rehabilitation Center involves individualized parent training using a 24-week program that improves children’s social communication skills.

Today, parents and therapists have many new applications and devices that support a child’s nonverbal communication. First and foremost, however, we strongly recommend an insightful look at how your nonverbal child communicates—in other words, how he sends messages to others.

As you and other parents of children with autism know well, non-verbal does not mean non-communicative. So we always want to start with a good understanding of children’s current communication level before attempting to help them move to the next level.

We regularly use the Communication Matrix, a skills assessment designed to evaluate children’s communication abilities. This tool is unique in measuring all possible communicative behaviors, including: pre-intentional (involuntary actions, including crying when wet or hungry); intentional (actions such as fussing and turning away that are not primarily intended for communication);  unconventional (tugging, crowding to get attention);  conventional communication (head nodding, pointing, etc.); concrete symbols (pantomime, “buzzzzz” to mean “bee”); abstract symbols (single words, manual signs); and language (oral and written word combinations, American Sign Language).

To be successful communicators, children need to see that their actions influence those around them, and they must want to communicate. Sometimes, it’s difficult to determine when nonverbal children are sending intentional messages—particularly when they prefer to play by themselves, engage in self-stimulating behaviors or have difficulty sustaining interactions.

There are several programs designed to initiate positive interactions and increase communication in children with autism, including First Things First, Indirect Language Stimulation, DIR/Floortime, the Hanen program, the Early Start Denver Model, and the Autism Parent Training Program. These programs have many similar components including putting yourself at your child’s eye level, allowing your child to direct activities (following his lead), and imitating your child’s behavior. These strategies help forge a connection of interests between you and your child and can support your child’s desire to communicate.

Once children communicate using concrete or abstract symbols, they may benefit from having access to additional communication tools. It helps to remember that we all use a variety of communication methods, including eye contact, facial expressions, body language, tone of voice and gestures. So you might want to start with a system of gestures or sign.

Other low-tech tools include picture symbols and PECS . Some children seem to respond to tangible symbols such as an actual key for “let’s go outside” or a cup for “I’d like a drink.” From the use of tangibles, families can move to photographs of familiar items and eventually to more abstract symbols. Children at this stage may benefit from Tangible Symbol Systems.

Finally, parents and therapists now have access to a number of technological devices and options, from a tape player with simple buttons for playing prerecorded messages and keyboards for typing messages to sophisticated voice output devices and specialized iPhone/iPad applications.

We hope you’ll have fun exploring these options with your child, ideally under the guidance of a therapist well versed in the best evidence-based practices. And please stay tuned for the fall release of the new Autism Speaks ATN brochure on Visual Supports and ASD. We’ll be posting it for free download on the ATN’s Tools You Can Use webpage.

Readers are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism or the provision of services related to autism. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of references listed. The resources listed in these pages are not intended as a referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. The contents of this blog are solely the responsibility of the authors and do not necessarily represent the official views of Autism Speaks, the Autism Treatment Network and/or the Autism Intervention Research Network on Physical Health.

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