Autism Speaks’ Autism Treatment Network (ATN) has competed successfully for another round of federal funding—$12 million—to continue to serve as the Autism Intervention Research Network on Physical Health (AIR-P). Read more in science newsat autismspeaks.org…
On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.
To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.
The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!
The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.
Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.
We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at firstname.lastname@example.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.
The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.
The symptoms of attention deficit and hyperactivity disorder (ADHD) create significant problems for over half of all children with autism and may be both under-recognized and under-treated by pediatricians. These findings—from Autism Speaks’ Autism Treatment Network (ATN)—were presented Sunday at The Society for Developmental and Behavioral Pediatrics annual conference, in San Antonio, Texas. For more information see our news item here.
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?
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.
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
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.
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?
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.
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?
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.
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?
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.
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??
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.
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.
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.
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.
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.
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.
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.
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?
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.
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
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?
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.
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?
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.
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
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?
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 email@example.com.
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.
Comment From Gina
My daughter has selective mutism. Is there a med . for this?
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.
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.
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?
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.
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!
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.
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?
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.
Comment From debra
Are the risks worth the results in autitic children with anger behaviour issues?
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.
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.
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.
How long do you recommend in trying a treatment before introducing another varialbe?
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.
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?
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 firstname.lastname@example.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
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?
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.
Comment From joanne
I had my son on melatonin and it never worked, is there another drug i can get to help him sleep.
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.
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?
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.
Comment From dee
my grandson has autism and his eating habits are very poor..school recommends putting him on antidepressants…will this help him
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.
Autism Spectrum Disorders Webinar September 19, 2011 from 1 to 1:45pm (ET)
The American Academy of Pediatrics Pediatric Care Online is hosting a FREE webinar on autism spectrum disorders (ASD). This webinar will be presented by Autism SpeaksAutism Treatment Network (ATN) clinician Patricia Manning-Courtney, MD, FAAP, associate professor of clinical pediatrics, pediatric developmental specialist, and medical director of The Kelly O’Leary Center for Autism Spectrum Disorders, our ATN site at the Cincinnati Children’s Hospital Medical Center.
Children with ASD are being recognized and diagnosed in increasing numbers. Early identification and treatment is key to maximizing outcome. Parents of children with ASD benefit tremendously from an informed and supportive Primary Care Provider. This webinar will focus on:
Screening and diagnosis recommendations
Overview of treatment approaches, including medication
Review of current controversies
To view the webinar on Monday, September 19, please use the following URL and password:
Please join us Wednesday, Sept. 14 at 1 pm Eastern/10 am Pacific, for a live webchat with Dan Coury, MD, medical director of Autism Speaks’ Autism Treatment Network (ATN) and chief of developmental and behavioral pediatrics at Nationwide Children’s Hospital, in Columbus, Ohio. Dr. Coury will be answering questions related to the release of the ATN’s first two toolkits for parents and healthcare providers:
Having one comprehensive “medical home” is crucial for families of children with special medical needs. That’s the conclusion of a new report in the journal Pediatrics. And it’s the philosophy at the heart of Autism Speaks Autism Treatment Network. Read more on our science news page …