I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.
While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.
Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”
Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.
On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.
Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:
- Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to empower families.
- We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
- We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
- Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.
These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.
Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.
I know exercise is important. But with all our autism-related therapies, there’s no energy left. Advice appreciated.
As challenging as it may be for anyone to develop and maintain a physically active lifestyle, the challenges can be amplified for individuals with autism spectrum disorder (ASD). We are constantly reminded how important it is to teach our kids to make healthy life decisions. But sometimes it can feel like an impossible task when they have other special needs and obstacles.
So it may be no surprise to learn that nearly a third of children with ASD are medically obese. The problem appears to increase with age, with obesity affecting over a third of young adults on the spectrum.
Inadequate physical activity is among the primary reasons for these high rates of obesity. But let’s be honest, getting active can be particularly challenging when a child or adult is also struggling with autism-related issues in areas such as self-control, motivation or physical coordination. And the sights, sounds and tactile aspects of team sports can feel overwhelming for someone with sensory integration issues.
But there’s great payoff in finding physical recreation activities that do work for an individual on the autism spectrum.
Did you know that exercise can decrease the frequency of negative, self-stimulating and self-injurious behaviors? This may be because the highly structured routines and repetitive motions involved in, say, running or swimming can distract from negative self-stimulating and repetitive behaviors. Physical activity can also promote self-esteem and improve mood and attention. For those who can participate in team sports, this type of structured activity can foster social interactions.
This isn’t to say that physical activity can or should replace proven behavioral interventions for ASD. Rather it can enhance their benefits.
For more information on recreational programs and activity tips for children and teens on the autism spectrum, see the physical fitness page in the Health & Wellness section of our website. To learn more about the importance of exercise for individuals with ASD, please see our special science report, “Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism.” And please use the comment section to share your experiences. What works and what doesn’t for you, your child or other loved one?
Please join us Thursday at 3 pm ET/noon PT for this month’s “The Doctors Are In” live webchat. Our featured guest will be pediatric dentist José Polido, D.D.S., head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network centers.
Dr. Polido was instrumental in developing the newly released ATN tool kit for dental professionals. He welcomes your questions about dental issues including dental hygiene and visits to the dentist.
The live webchat will be hosted by Autism Speaks Head of Medical Research Joe Horrigan, M.D.
We hope you’ll join us!
What: “The Doctors Are In” webchat, with Drs. Horrigan and Polido
When: March 1 at 3 pm Eastern; 2 pm Central; 1 pm Mountain; noon Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page
In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).
Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:
- Raise public and professional awareness in the region
- Provide information resources for parents and professionals
- Collect public health data on the locations of individuals with autism
- Conduct professional training in the areas of diagnosis, clinical management and early intervention
- Provide evidence-based services for both children and adults
- Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism
Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.
Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.
Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.
The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.
The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.
In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.
The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.
The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.
SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.
Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.
The international journal Autism released a new podcast in its Autism Matters series. Sven Bölte, Ph.D., director of Sweden’s Karolinska Institute Center for Neurodevelopmental Disorders, discusses his research on gender differences in cognitive function among high-functioning persons with autism spectrum disorder. Autism Matters podcasts are hosted by University of London psychologist Laura Crane, Ph.D.
The series is designed for a broad audience and aims to showcase the latest research published in the journal with an emphasis on real-world relevance.
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.
I want to share my perspective on an important new research finding released today. The study is headed up by Joe Piven, at the University of North Carolina, Chapel Hill. I am a co-author. The study followed the early brain development of 92 infant siblings, 28 of whom went on to develop autism spectrum disorder (ASD). Infants were imaged using MRI at 6, 12 and 24 months. Those who later developed ASD showed abnormal development of white matter fiber tracts by 6 months. White matter is the part of the brain cell, or neuron, that connects one part of the brain to another. (See our related news item here.)
This finding tells us that, very early and before the emergence of behavioral symptoms, the neural networks that connect different brain regions are not developing normally in infant siblings who go on to develop autism. Previous studies of both children and adults have repeatedly shown that autism involves abnormal connectivity between different brain regions. In fact, my colleagues at the University of Washington and I did one of the first studies to show this.
Now we are seeing that these changes are evident by 6 months of age. Future research is needed to help us understand what is causing these early brain changes.
Why is this finding important? First, it helps us understand why people with autism have trouble with complex behaviors such as social interactions. Even simple social behaviors involve coordination of many brain systems. For instance, when something catches a baby’s interest, the normal response is a combination of gestures, babbling and eye contact. This requires several brain regions to communicate efficiently with one another.
Even more important, these results offer promise of using imaging results or other “biomarkers” to flag risk of ASD before symptoms become evident. In other conditions such as Alzheimer’s disease and Parkinson’s disease, such early biomarkers are being used to identify those at risk and allow treatment to start before symptoms appear – to maximize benefits.
We can imagine the day when noninvasive brain imaging is available for babies at high risk for autism (such as infant siblings of affected children). When the imaging reveals tell-tale abnormalities, these babies can receive medical or behavioral treatments that stimulate normal brain development. For example, a recent study by Marcel Just demonstrates that certain reading interventions for children with reading disabilities produce positive changes in the children’s brain white matter, or neural connectivity.
So, it’s reasonable to consider that some of the changes we are seeing in 6-month-old infants might likewise be improved through early intervention. Just’s study suggests that such “rewiring” may possible even later in life with interventions that support the connectivity between different brain regions.
Parents who are concerned that their baby might be at risk for autism may be wondering whether they should ask their doctor to order an MRI. The results published today are too preliminary for that. We are not recommending MRI screening for autism at this point. The best way to screen for autism at this time is to look for early behavioral signs (see Learn the Signs) and use screening tools such as the M-CHAT.
The research published today was funded in part by Autism Speaks and would not be possible without our community’s passionate and continuing support. Thank you.
In 2003, I moved to California from my native Hawaii. I’d just graduated from college, and I immediately accepted a job with Autism Genetic Resource Exchange (AGRE) with one goal in mind: Start building my career in research!
I didn’t know that this job would become so much more.
Autism quickly became my passion. As I learned more about the complexities of autism, I knew I wanted to make a difference in the lives of affected families. My interactions with AGRE parents and grandparents have been amazing. They have remarkable stories about their children and how each is wonderfully unique.
At the same time, I find it a great challenge to address some of their greatest concerns. I understand their urgent need for answers. But as someone trained in science, I also know that real answers sometimes take years to deliver. I remind our parents to never give up hope.
One of my most memorable interactions occurred at a Defeat Autism Now (DAN) conference several years ago. Autism Speaks had just started to become a prominent player within the autism community, and there was still apprehension about us. Unfortunately, I was not well equipped to answer some of the challenging political questions people asked me that day! I felt like a moving target and was left confused because I had thought we were all working towards the same goal: helping people with autism!
Just as I was packing up for the day, a man came over to the Autism Speaks table to talk with me. “I’ve been meaning to come over here all day,” he said. “I just want to thank you for being here. It means so much to us that you’re here to support us. Thank you.” To this day, whenever I feel lost in the politics and paperwork, I remember that moment and am reminded by why I’m here at AGRE.
Ultimately, I think the future of autism research lies in collaboration with scientists and families around the world. So it is very exciting to see AGRE’s mission begin to expand outside of North America. We know that autism is a global issue, and I think diversity is the glue that autism research needs to put all the pieces together.
In closing I want to thank all our supporters – those who Walk, those who participate in research, and everyone who cares about our mission to improve the lives of all who struggle with autism. Thank you so much. I love being part of this community.
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.
Please join us next month (March 1st) and every first Thursday at 3 pm Eastern. Look for the “Live Chat” tab in the left column of our Facebook page: https://www.facebook.com/autismspeaks
|2:57||Hi Everyone! This is Dr. Dawson. We will be getting started in just a minute or so. We are glad you are here.|
|2:59||Hi – this is Dr. Horrigan – I’m here , too – thanks for attending today’s ‘office hours’|
|3:02||Advance question from Lisa, teacher of students with ASD: I have heard a few things…completely rumors…about how gluten-free diets affect those with autism. What are the affects, positive or negative, if any. Thanks!|
|3:02||Lisa: This is Dr. Horrigan. Yes, for some youngsters with autism, gluten-free diets can be helpful, but it is a minority rather than a majority that benefit, and it is usually youngsters that have a specific family history of GI problems and difficulties with food sensitivities, including more explicit problems like Celiac sprue related to gluten. It is worth having a discussion with the child’s physician about the potential utility of elimination diets (like gluten-free) if the youngster has persistent gastrointestinal problems and the family is motivated to shift (oftentimes the whole household, to assure the child’s adherence) to the specialized diet. The participants have to watch out, though, because it is relatively easy to become deficient in some essential vitamins and minerals if a rigorous elimination diet is pursued – so supplementing with essential vitamins and minerals would be important, too.|
|3:05||Hi Tina, There are some good books that offer strategies for teaching children with autism to use the toilet. Here is one suggestion: http://www.amazon.com/Toilet-Training-Individuals-Autism-Developmental/dp/1932565493 . We will be posting a tool kit on toileting on our website soon so keep your eyes out for that. YOu might also want to check with your behavior therapist, if you have one, who can develop a behavioral plan for teaching toileting.|
|3:07||Hi Cara – this is Dr. Horrigan – Intuniv (guanfacine) is becoming more popular. It is formally indicated for the treatment of ADHD, and it is often helpful in combination with stimulant medicines like Ritalin or Adderall. But it can be helpful on its own to soften difficulties with impulsivity and excesive emotional outbursts. It doesn’t work for everyone, though, and it has its own unique side effects, especially if the dose is too ambitious (e.g. sedation/sleepiness/fatigue, headache, and there is even a potential for decreased blood pressure). So it needs to be taken under a doctor’s supervision. Definitive studies in the area of autism have yet to be completed at the time of this writing, but they should be forthcoming.|
|3:08||Dear everyone, Many of you have had questions about the new revisions to the diagnostic criteria for autism. Below is our policy statement on this issue which describes the issues that we all are concerned about and what Autism Speaks is doing to ensure that the revision doesn’t end up excluding people from obtaining the services they need.|
|3:09||Autism Speaks Statement on Revisions to the DSM Definition of Autism Spectrum DisorderAutism Speaks is concerned that planned revisions to the definition of autism spectrum disorder (ASD) may restrict diagnoses in ways that may deny vital medical treatments and social services to some people on the autism spectrum. These revisions concern the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for publication in spring 2013.We have voiced our concerns and will continue to directly communicate with the DSM-5 committee to ensure that the proposed revision does not discriminate against anyone living with autism. While the committee has stated that its intent is to better capture all who meet current diagnostic criteria, we have concluded that the real-life impact of the revisions has, to date, been insufficiently evaluated.Autism Speaks is committing substantial effort and resources to fund definitive research to ensure that the final definition of ASD meets the following criteria:1. Assures that all those who struggle with autism symptoms receive the treatment, services and benefits they need, without discrimination;2. Affirms that ASD can be a lifelong diagnosis, while allowing for treatment and services to change with an individual’s evolving needs;
3. Supports the importance of early ASD diagnosis and treatment as essential for helping individuals achieve their best possible outcomes and avoids creating barriers.
As the proposed diagnostic criteria are evaluated over the course of 2012, Autism Speaks will be working with leading experts in the field as well as community stakeholders to evaluate the potential impact of the DSM revision on our community and to ensure that all necessary adjustments be made to assure access to vital treatment and social support resources for all those who struggle with the symptoms of autism.
At the same time, we will actively serve as an informational resource and advocate for all members of our community, as they seek to make their needs known and understand how the evolving changes will affect them and their families.
|3:11||Dear Nancy, This is Dr. Dawson. Does your adult daughter have significant problems with social interaction, such as problems with eye contact, difficulties forming friendships, or trouble with conversational skills? Does your daughter have overly focused interests or engage in repetitive behaviors? If so, she may have an autism spectrum disorder. Having a diagnosis may open the door to services that could help. Check the following link to find resources in your area:|
|3:12||Dear Guest at 3:02 – Yes- please just submit your question.|
|3:14||Dear Tina, A child with autism can also have dyslexia, that is, trouble with reading. It is important that you have your son evaluated by a person who has expertise with dyslexia so that you can provide treatment for his reading difficulties along with treatments for his autism.|
|3:16||Dear Linnea – this is Dr. Horrigan – I am assuming that SPD refers to “sensory processing disorder”, is this correct? There is a suite of specialized, hands-on tests that occupational therapists use to diagnose under- or overactivity to sensory stimulation, whether it is touch or heat/cold or sound, etc. I agree with you that it can be difficult to disentangle sensory prcessing problems from free-standing difficulties with anxiety. A lot of times it is important to determine if there is a high risk of anxiety disorders in an individual with autism based on one’s family history of anxiety, in which case, behavioral and medocation treatments (e.g. SSRIs like Zoloft/sertraline) can be really helpful, and you can get more traction from the desensitization techniques used by occupational therapists (e.g. brushing, as one example).|
|3:18||Hi Lori, This is Dr. Dawson. Some parents report that a GFCF diet can help even though specific GI symptoms are not present. If you decide to try a GFCF diet, be sure to have someone who doesn’t know whether or not your child is on the diet keep a record of your child’s behavior (such as your child’s teacher). This way, you can objectively determine if it is helping. Also, check with your pediatrician about monitoring your child’s nutritional intake to make sure he or she is getting the nutrients your child needs.|
|3:21||Dear Sandhya, This is Dr. Dawson. The diagnosis of autism is made on the basis of behavior observations. There are no specific lab tests for autism. Once a child has been determined to have autism, based on behavior, your doctor would want to order specific genetic tests to determine if there is a genetic cause. Other lab tests are sometimes ordered. If you have concerns about your child’s eating, you should talk to your child’s pediatrician. Autism is often associated with difficulties in eating, such as food allergies and food sensitivities.|
|3:24||Dear Guest – this is Dr. Horrigan – that must be very stressful, having such unpredictably as to when your son will/won’t eat. It would be good to know exactly where your son is on the CDC growth charts, and what sort of medical workup has ben done so far. . I think at CHOP they will start off with straightforward things like a flat plate x-ray of your son’s abdomen (it’s painless) and they will obtain a comprehensive dietary history. They will also look at what runs in the family (e.g. things like Celiac sprue, irritable bowel, etc.). If there is specific evidence for a malabsorbtion syndrome, they will do more intensive things. They may also have to look more specifically at endocrine issues which usually means some blood tests (the blood volume they draw isn’t too bad, and they shoudl use topical anethetics or numbing meds) and they may also want to do an MRI (e.g of your son’s head), which is challenging because it can be loud and long and he will have to keep still – often means sedation has to be used.|
|3:25||Dear Enid, This is Dr. Dawson. The Autism Speaks website is full of information and resources, including a list of books on different topics. Look under “What is Autism” and “Family Services” for information. I really like Lynn Koegal’s book – Overcoming Autism.|
|3:27||Dear everyone, I notice that there are many questions about GI problems, constipation, toileting, and eating. On our next webchat (next month), we will have a gasteroenterologist with expertise in autism on this webchat so we can provide more detailed information. Autism is commonly associated with Gi problems and it is important that these be addressed by a gasteroenterologist. These problems can interfere with a child’s ability to learn and behave well.|
|3:30||Dear Guest – this is Dr. Horrigan – I may have missed the first part of the question or the discussion thread about bed-wetting. But what comes to mind is that there are basic behavioral manuevers that can be helpful (e.g. humane versions of fluid restriction before bed, and also humane use of bell and pad/alarm techniques – the latter can be tricky). It is also important to make sure tht he is not constipated as this can cause overflow incontinence even at night. There are some meds that can precipitate enuresis (e.g I am thinking of unpredictable responses to meds given at nightime like risperidone and some of the SSRIs), so you have to make sure that you are not dealing with a medicine side efect. That said, it is possible that other meds like DDAVP pills (0.2 to 0.4 mg) or low-dose imipramine (25 mg or less) can be really helpful if the bed-wetting is really causing a lot of distress.|
|3:31||Dear Jill, This is Dr. Dawson. Sleep problems are very common in children with autism. On February 14th, Autism Speaks will be releasing a new tool kit for families and providers on how to address sleep problems in children with autism. Check back on our website on the 14th. I think you will find it very helpful. We are funding many studies on sleep, including treatment studies.|
|3:35||Dear Joshua, This is Dr. Dawson. It is useful to understand what is the function of the delayed echolalia for your son. Is it a way of communicating his needs and wants? If so, then modeling a simple phase for him to use instead of the echoed response (ideally, that uses part of his response) and having him repeat the appropriate phase before getting what he wants may help. Is it a repetitive behavior? Distraction and involvement in other activities could be useful. Is it a sign of anxiety? Then, addressing the source of anxiety can help. It is true that echolalia does tend to naturally decrease as functional language develops.|
|3:38||Dear Lisa, This is Dr. Dawson. Many children with tubersclerosis also have autism and it is important that both diagnoses are made. This will allow your child to receive specific interventions to address the symptoms of autism (e.g. social impairments) that not all children with TSC have.|
|3:38||Dear Lori – this is Dr. Horrigan – does your son have an IEP or 504 plan that includes the classic accomodations for indivduals with ADHD? I am thinking about the use of a carrel, as needed, and the proactive use of verbal cues as transitions occur in the classroom, as well as electronic desktop cueing devices triggered by the teacher or assistnat. In terms of meds, I know how you feel, in terms of your wariness, although sometimes you can get great benefit from the judiciosus and thoughtful use of stimulants, with the knowledge that each person has unique responses to each of the stimulant formuations/preprations (e.g. it is not just about Adderall or just about Ritalin, there are a whole range of choices), and this is important because soemtimes a youngster with HFA can get a very significant effect/benefit from a low dose of a carefully chosen med|
|3:40||Advance question from Pamela: My question is…is there any link between taking antidepressants while pregnant (2nd & 3rd trimester)(SSRI) and autism in the newborn child?|
|3:41||Hi Pamela. This is Dr. Dawson. We have written previously on this topic, and I refer you to that blog (link below). This is a question you should discuss with your physician because each woman’s situation is different in terms of weighing the risk and benefits.
|3:42||Dear Kathleen, Some children with autism have sensory integration dysfunction but not all do. Children with autism tend to have more significant difficulties in social interaction (e.g. eye contact, forming friendships, interactive play) and also have repetitive behaviors. You should have your son evaluated by a doctor with expertise in autism to better understand his diagnosis. You can check on this link for resources in your area:|
|3:45||Advance question from Andrew: Where can we find career guidance in the autism research field?
I’m a 24 year old patient advocate. After spending 3 months on a Nation Outdoor Leader School trip in India, on which I watched a classmate pass away, I have a renewed sense of responsibility to my community. How can I help? I want to start getting my undergraduate degree this semester, despite the deadlines having been passed for applications (I just got home from India). I want to know where I should start, what types of paths are open to me, and other ways that I can help.
|3:46||Dear Andrew. This is Dr. Dawson. There are many ways to get involved! You can volunteer at a local program for children with disabilities, become an advocate (see Autism Votes LINK), join a walk for Autism Speaks (LINK), or get involved with other college students (Autism Speaks U LINK). You can find the local groups who are providing early autism intervention services and train to be a therapist. There are many career options including becoming a clinician (physician, psychologist, occupational therapy, speech-language therapist), a teacher, a scientist, or lawyer, to name a few. It truly takes a village to support people with autism and other disabilities. I’m glad you are eager to help.HERE ARE THE LINKS:
Autism Speaks U:http://events.autismspeaks.org/site/c.nuLTJ6MPKrH/b.4385867/k.BF59/Home.htm
|3:48||Dear Melissa, Children with Asperger syndrome are often helped by behavioral interventions that focus on social skills training. There are also interventions (Cognitive behavioral therapy) that can help with anxiety which is common among children with Asperger syndrome. Anger/emotion-regulation is often a challenge. Again, there are behavioral strategies that can be used to teach your son to better manage and appropriately express his feelings. Clinical psychologists are typically well-trained in these therapeutic methods. You should check in your area for a clinical psychologist who works with children and/or chidlren with Asperger syndrome and also check out the resources in your area on this link:|
|3:49||Hey everyone: When we posted the link to the resource “library” earlier, we meant THIS link to the resource “Guide.” Here it is again: http://www.autismspeaks.org/family-services/resource-guide|
|3:52||Dear Trish – this is Dr. Horrigan. I know it is very very tough to have a child that awakens frequently duirng the middle of the night. It will get better, I promise you, although it may take time. Behavioral contributions are always important to look at. One thing to think about is whether there are unitended reinforcers (rewards) that are occurring on a behavioral level that might be reinforcing her middle-of-the-night awakening (inlcudes letting her get in bed with you after she awakens). I am sure you have already thought about this. The other issue is whether she is accustomed to only a very specific set of cues (e.g. a CD with lullabies playing as a backdrop), associated with being able to fall asleep initially, that can be readjusted. In terms of meds, melatonin only helps with sleep onset, not continuity of sleep (staying asleep) and it shouldn’t be given during the middle of the night (e.g. after midnight) – it can make things worse the next night if it is given that way, because it can distrub the individual’s circadian rhythm. I would have a consultation with a sleep specialist, if you can do that, and this will allow you to discuss other medication possibilites that may be more effective with middle-of-the-night awakenings such as off-label miniscule doses of trazodone or mirtazepine or doxepin, although these meds for a 3 y.o. require a sleep specilist to be involved. You also could get some good behavioral tips from a sleep specilaist that are tailored to your daughter’s unique sleep habits. By the way, on February 14th, we will put up on our web site a “tool kit” on sleep hygiene that I think will be very helpful to parents.|
|3:54||Hello Guest at 3:12. This is Dr. Dawson. Is it not common for a child with autism to engage in self-stimulatory behavior when he is nervous, upset, excited, frustrated, or even just wishes to communicate something. It would be helpful to try to understand what is the function of the visual stims. You can do some detective work by recording when it happens and then making a guess what the function is. If your child is trying to communicate something (e.g. This is exciting! or I don’t like this) then you can model for your child the appropriate behavior. If the function of the behavior is to calm himself, then using other ways of calming your child may help. The fact that your child stims when asked to do a task suggest that he might be telling you that the task is either something he doesn’t like or alternatively something he is excited about. If he doesn’t seem to like the task, consider ways of changing the task to make it more appealing (easier, broken into smaller parts).|
|4:00||Dear Stephanie – this is Dr. Horrigan – I think they probabaly meant “slowing” rather than “sluggishess”, with regard to the wave length frequency of the most common waves seen on your daughter’s EEG. It is not a very specific finding, frankly. It would depend on whether the slowing is localized to a specific part of her brain, or if it is generalized (all over), to know if it is a patten that is clinically meaningful and amenable to treatment (e.g. medicines, like anti-seizure meds). . Slowing is associated nonspecifically with developmental and intellectual disabilites, and may (or may not) be associated with a future risk of seizures. Seizures are diagnosed clinically, by the way (e.g. by observing them directly in the affected individual). Enriching your daughter’s daily life with diffenet types of sensory stimulation (presuming she can tolerate this) and behavioral therapies (e.g. ABA) can also be associated with the lessening of EEG slowing, and rehabilitation, in general .|
|4:01||Dear Lori, As your son gets older, he may be developing a stronger sense of what he like and doesn’t like and now has the ability to express himself. So, that may be part of what you are seeing. You mentioned, however, that he is also showing some symptoms of anxiety and it makes me wonder whether your son’t increase in rigidity might be a part of an anxiety disorder. Autism is often associated with anxiety symptoms. I would encourage you to have him evaluated by a child psychiatrist or clinical psychologist. There are specific interventions, such as cognitive behavioral therapy, that can help. In addition, medications are often helpful.|
|4:03||Advance question from Krista
My 14 yo son has a diagnosis of Asperger’s. Last year he had his brain mapped with an EEG, and subsequently did 16 weeks of neurofeedback therapy. My son has done many, many therapies over the years, and neurofeedback was the first (other than speech articulation) that seemed to make any difference. His interest in engaging with others and his ability to socialize successfully increased. His executive function skills improved. Family members and others, including his music therapist, noticed as well–even his guitar playing improved noticeably. What does the research say about neurofeedback in ASD individuals? Is this an area of research you are funding?
|4:03||Krista: This is Dr. Horrigan. It’s really great that your son is doing so much better, and if neurofeedback played an important role in getting him there, then I think that is wonderful. There are some small studies that have reported positive results with neurofeedback in individuals with autism, with success rates ranging from 1 in 4 to 4 out of 5. But it is not clear to me if publication bias is playing a role (e.g. only the positive studies get written up and published). My experience has been closer to the 1 in 4 success rate, and success seems to be very dependent upon the expertise and charisma of the trainer, the commitment of the family, and the level of disability of the individual with autism (lesser levels of disability seem to be associated with greater probability of improvement with multiple rounds of neurofeedback). It is also expensive, and it can be very tough to get insurance to pay for it, so that is a pragmatic consideration. If a family wants to pursue neurofeedback for their loved one, I would recommend working with the neurofeedback therapist to articulate a very clear idea of what success needs to look like, even after the first 5 sessions, so that they can get out early, before having to spend too much money, if the ultimate likelihood of success looks like it is going to be limited. One important upside of neurofeedback, when it does work, is that the rates of sustained improvement are quite good and success can be sustained with periodic ‘booster’ sessions|
|4:06||Dear Shelly – this is Dr. Horrigan – there is decent evidence that a subset of kids (with or without autism) are senstiive to artifical food colors and dyes. Some red, yellow and blue dyes are especially likely to have this type of association in susceptible individuals. Oftentimes, after incidents like the one that you described (the vomiting), the only way to get close to a definive answer for your child is to scrupulously eliminate that potentially offensive color (e.g. that red dye, in this instance) and then see if things settle down for your son. I know it is a hassle because red food dye/color is failry ubiquitous, all over the place in foods that we all eat, but it is worth trying to get it out of your son’s diet to the extent that you can, to test out your theory. You could be right.|
|4:08||Advance question from Jolanta:
Hello. My son who is 6 years old is autistic. We live in the United Kingdom. We are considering having another child, but afraid of a possibility that a new child would develop autism. What are the chances? I’m 39 so I need to decide soon. Thank you.
|4:09||Hi, Jolanta. This is Dr. Dawson. In the past year, there was a new study that was published that examined the risk for autism spectrum disorder in younger siblings. Although each individual family’s situation is unique, at a population level, the overall risk of a sibling of a child with autism developing the disorder is about 19%. We have summarized the new information on risk rates and had a webchat specifically devoted to that topic. I hope you find this information useful.
Here are the two links:
|4:11||Advance question from Desray: Hi my son is 5 an half yrs old. He’s stll in nappies and I’m finding it very hard to get him out of them. The problem I’m havin is that,he nows how to wee in the toilet but he does not want to put underpants or shorts on after his visit to the loo. I’m realy having a hard time dealing with this disorder. He’s my only child and I’m scared for him. I would also like to no if Risperdal or Ritalin is ok for Autistic kids to take. Sometimes Jose has some serious meltdowns sometimes and I feel like I need to give him something. Plse help. I’m from South Africa where we don’t have much assistance. Thank u for all that yull do. God Bless.|
|4:12||Dear Desray, This is Dr. Dawson. It is terrific that your son is now able to wee in the toilet. That is half the battle! I suggest that you create a series of pictures (these can be photos, drawings, or clippings from magazines) that illustrates the series of steps involved in going to the loo. This would include not only weeing in the toilet, but also pulling up his pants, washing his hands, and so on.Below is a link that describes how to develop these visual supports. You should begin by giving him a reward (this can be a physical reward, praise, food, whatever he likes) after he wees in the toilet. Then, slowly add each new behavior over time, encouraging him to carry out the next step and then rewarding him. Over time, you can start to withdraw the amount of help you provide and rewards for each step as he becomes more capable of doing it on his own. Keep in mind that pulling on his underwear and shorts requires many skills – motor skills and thinking skills – so you may need to provide both the pictures and physical help for a while.Regarding your son’s meltdowns, you should start by keeping a record of when he has those meltdowns and see if you can figure out why. Is it because he is tired? Is there a specific activity or environment that is upsetting? Is he trying to ask for something but doesn’t know how? Use this information to make adjustments in his environment and routine to try to avoid the things that are upsetting. If he is frustrated because he is trying to request something, prompt him to use a more appropriate way of expressing his needs (he could point to a picture, touch what he wants, or say a simple word) and then immediately reward him for using the more appropriate behavior. Talk to your son’s teachers to see if they have suggestions too.Autism Speaks will soon be publishing a new tool kits for handling challenging behaviors – so keep looking on our website for that. We also have a tool kit that can help you decide whether you should consider medication (LINK below). It is best to see if behavioral strategies are effective before turning to medications.HERE ARE THE LINKS:
Visual supports tool kit:http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports
Medication decision tool kit:http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/medication-guide
|4:14||Dear Mary – this is Dr. Horrigan – it sounds like your son is feeling a lot better and i am very grateful for that. In terms of what he is taking, the only thing that came to mind immediately is to make sure that he is not too overboard on the B6 (e.g. I usually go up to 100 mg, max). I would need to know the exact compostion of the Super B to give you a more sophisticated comment about other potential yellow/red lights. The Monster drinks are probably ‘benficial’ for your son due to their load of caffeine and sugar. I would rather he try coffee, if he really feels that needs that extra benefit provided by cafeine. Just being practical here…|
|4:15||Advance question from Mel:
Hi, I never done this before but I was wanting to ask a question. I have a 12 year old son with autism and a 4 year old daughter who I think has autism. We’ve had her tested and she shows a lot of autistic traits. I was told that because she can respond when they say hi, how are you, that she isn’t autistic at all. Is it possible that they misdiagnosed her? Should I try to find somewhere else to take her? Thank you.
|4:15||Dear Mel, This is Dr. Dawson. I’m glad you asked your question. If you feel that your daughter may have autism and the doctor you saw missed it, you should seek another opinion. Siblings of children with autism sometimes have difficulties in areas related to autism, such as social and language skills, without meeting full criteria for autism. Even if your daughter is found not to meet criteria for autism, she should receive help in the areas she has difficulty in, whether that is language, learning, or social behavior.|
|4:17||Advance question from BA Travis:
I am looking to see if there has been any research or if any of the Drs. would be able to tell me about links to high exposure to pharmaceuticals and ASD.
The background is while I was pregnant I was working in a pharmeceutical facility that manufactured over the counter cold and pain medications. I was exposed daily to high volumes of raw powdered chemicals. I asked to be transfered but was denied. We were required to ware dust masks when pouring the powdered materials but that was it. I had a healthy baby after over 20 hrs of labor but by 2.5 he was diagnosed with being high functioning Autistic. At 5 he is on par educationally for his age but tests at around 30 months for speech and has trouble with focusing on the task at hand. Before I left the company over a year ago an environmental quality manager was brought in to do air testing and before long all personel working in the same areas as I was were being required to ware tyvek suits with battery operated air respirators.
The thought has been in the back of my mind but not being able to find anything online on a link but after the drastic change in the way the employees now have to handle the product has brought that thought to the forefront.
|4:17||Dear BA Travis: This is Dr. Horrigan. While you have provided a limited amount of information here, it does sounds suspicious that the company changed its policy to require the use of specialized equipment by workers ostensibly to prevent hazardous exposure to something in the workplace. I would need to know specifically what chemicals that they had you handling, to have a more sophisticated insight into the potential relationship of in utero exposure to those chemicals and neurodevelopmental disorders. This is the type of inquiry that we are very interested in and we have funded and are funding several lines of research to help identify the relevant prenatal risk factors arising from the environment that are associated with autism.|
|4:19||Moderator’s note to BA Travis: You can send more info/reply after the chat to firstname.lastname@example.org.|
|4:20||Advance question from Vanessa:
My 7 year old son has been diagnosed with pdd-nos, anxiety and adhd. Currently he is having a hard time at school connecting with other children. He is obsessed with Hello Kitty and gets picked on by the kids in his class. Recently he is telling people he is a girl or that he wishes he was a girl. He is also introducing himself as his younger brother. I can kind of deal with all this but he seems to be increasingly aggressive lately and hurting himself. I am concerned because I am afraid he will really harm himself or another student. Is there anything I can do to help him? Usually he is pretty easy to work with and calm down but recently he just seems so angry. He is currently on a low dose of Zoloft and Intuniv.
|4:21||Vanessa: This is Dr. Horrigan. The first thing that question that came to my mind is whether there are any easily identifiable factors occurring in your son’s school environment that are causing him to feel so distressed. For example, I am worried that he may be getting bullied, perhaps by multiple classmates. And it may be sneaky bullying, it’s hard to tell. Either way, any type of bullying would be completely unacceptable. Have you had a chance to discuss the issue of triggers for his aberrant behavior with his teacher(s), and/or the Exceptional Children’s coordinator, and have you had a chance to observe him in the school setting yourself, to see what may be associated with his distress? I also wonder if they might be pushing him too hard, with regard to the curriculum. Again, it’s hard for me to say. You need more information from the people at school. In terms of the medications, I am not sure how long your son has been taking Zoloft and Intuniv, but both can cause paradoxical heightening of anxiety as well as paradoxical worsening of irritability (it is more common when first starting Intuniv, in my experience). If you suspect that the medications may be worsening things, then talk to your son’s doctor and discuss a trial off one or both of the medication(s).|
|4:24||Thank you all so much for joining us, and we’re sorry we weren’t able to get to all your questions. Please join us again next month, on March 1st, with your questions. We’re going to invite a gastroenterologist with expertise treating those with autism to address your many GI concerns. Thanks again and be well!Dr. Dawson and Dr. Horrigan|