Archive
Tummy Troubles: Studying the Relationship Between Autism and Gastrointestinal Disorders
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.
Transcript of Today’s ‘Office Hour’ Webchat with Drs. Dawson and Horrigan
Thanks for joining today’s “Office Hour” webchat with Drs. Dawson and Horrigan . Here is the transcript.
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
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| 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. | ||
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| 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. | ||
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| 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. |
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| 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: |
| 3:11 | http://www.autismspeaks.org/family-services/resource-library |
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| 3:12 | Dear Guest at 3:02 – Yes- please just submit your question. |
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| 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. |
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| 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). |
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| 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. |
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| 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. |
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| 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. |
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| 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. | ||
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| 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. | ||
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| 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. | ||
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| 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. | ||
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| 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. LINK: (http://blog.autismspeaks.org/2011/09/02/can-my-taking-medication-during-pregnancy-cause-autism-in-my-baby/). |
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| 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: |
| 3:42 | http://www.autismspeaks.org/family-services/resource-library |
| 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 Votes:http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm Autism Speaks U:http://events.autismspeaks.org/site/c.nuLTJ6MPKrH/b.4385867/k.BF59/Home.htm |
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| 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: |
| 3:48 | http://www.autismspeaks.org/family-services/resource-guide |
| 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 |
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| 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. |
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| 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). |
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| 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 . |
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| 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 |
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| 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: Summary: http://blog.autismspeaks.org/2011/08/15/risk-of-autism-in-siblings/ Webchat: http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/ |
| 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 |
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| 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. Any thoughts? |
| 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 sciencechat@autismspeaks.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 |
New Insight into Autism and Intestinal Problems
As parents have long reported, many children with autism experience severe gastrointestinal (GI) problems, and the associated discomfort can worsen behavior. Now research supported by Autism Speaks is lending new insight into how the GI activity of children with autism may differ from that of other children in key ways. Read more in the science news section at autismspeaks.org.
New Trailblazer awardee answers questions about GI and autism
Gastrointestinal (GI) problems affect many children and adolescents with autism spectrum disorders (ASD). Access to rigorously studied treatments for medical conditions such as GI is a major unmet need for families. The Autism Speaks Autism Treatment Network (ATN) provides experts in the care and management of GI problems for these children and engages in clinical research. However, the underlying nature of GI dysfunction in ASD and its relationship to etiology and ASD symptoms are still poorly understood. This information is critical to developing better and more targeted treatments, so both clinical and basic research in this area is needed.
Given the importance this issue, Autism Speaks has recently announced a major Suzanne and Bob Wright Trailblazer Award for research into the biological mechanisms of GI disorders in ASD. (Read a press release about the award). The new study brings together innovative and cutting-edge pilot projects that form a new synergistic and coordinated effort. The connections between irregular bowel movements, gut barrier function, gut bacteria, immune function, and abnormal behavior have as yet not been investigated in ASD. This Trailblazer Study will examine these potential links.
We were privileged to have a chat with one of the key investigators on the study, Dr. Alessio Fasano, pediatric gastroenterologist at the University of Maryland School of Medicine (UMDSOM). He is professor of Pediatrics at UMDSOM and Director of the Center for Celiac Research and for the Mucosal Biology Research Center.
Autism Speaks: How many children with ASD are affected by GI disorders, and what are the most common problems they suffer from?
Dr. Fasano: The impact of GI problems in children with ASD is difficult to quantify since some of the symptoms, like stomachache or abdominal discomfort, cannot be communicated by nonverbal or minimally verbal children. For this reason, the percentage of ASD children suffering from GI symptoms reported in the literature varies from 9% to 90%. The most common GI symptoms include chronic constipation, stomachaches with or without diarrhea, and underwear soiling. Disturbed sleep patterns and nighttime waking also have been described as possibly secondary symptoms to gastroesophageal reflux (GERD).
Autism Speaks: Why is it important to study GI disorders specifically in children with ASD? Don’t we already know how to treat GI disorders in children?
Dr. Fasano: ASD is comprised of a mixed bag of different cases that share the behavioral description typical of ASD. In other words, ASD might be the “final destination,” but the route to get there can vary from individual to individual. Some children may reach their ASD destination through the “GI route,” meaning that it is possible that their GI disorders can lead to ASD in genetically susceptible individuals. By studying GI disorders specifically in children with ASD, we are not simply trying to develop methods for a better management of GI symptoms. Rather, we have a much more ambitious goal: We are trying to understand the underlying physiology of ASD; we are trying to “walk the same route” that these children took to arrive at their ASD “final destination.” By doing so, we hope to help them turn around and walk back from that ASD destination.
Autism Speaks: Please describe the study briefly in your own words.
Dr. Fasano: We believe that a few things are key ingredients of the ASD recipe: 1) Genetic predisposition (as suggested by twin studies); 2) Environmental triggers (nutrients, metals, additives, oxidants, to name just a few); and 3) An impaired gut barrier (leaky gut). Our studies will attempt to connect the dots among these three elements by 1) establishing whether the composition of intestinal bacteria in children with irregular bowel movements is different in ASD and non-ASD children and 2) whether this difference activates specific metabolic pathways leading to an immune response causing inflammation and, consequently, behavioral changes in genetically susceptible individuals. We will integrate our clinical studies in ASD children with a mouse model of autism, not only to validate our clinical findings but also to explore the possibility of specific interventions to modify the gut bacteria in order to alleviate the ASD-related behavior.
Autism Speaks: If our ultimate goal is to find appropriate treatments for GI disorders in children with ASD, why spend so much effort on studying the biology of the GI dysfunction?
Dr. Fasano: It is my humble opinion that a better understanding of the biology of GI dysfunctions that afflict many ASD children is the key to unbundling the complicated path that brought them to ASD. By answering some of these fundamental questions, we can follow the “bread crumbs” that they left behind during the journey toward their ASD final destination.
Autism Speaks: What are the top three things that we will be able to learn from the study?
Dr. Fasano: We will be able to answer the following three fundamental questions:
- Is there a specific composition of “bad bacteria” that can lead to a leaky gut and inflammation, and consequently, to ASD in genetically predisposed children?
- If this is the case, do these bad bacteria activate specific metabolic pathways so that we can search for metabolites that can be used as biomarkers (i.e., red flags) indicating that they embarked upon a journey that led to ASD?
- Can we manipulate the bacterial composition in the gut of children with GI disorders in order to correct the leaky gut and inflammation (by monitoring the disappearance of the metabolic biomarkers) and consequently, improve their behavior?
Autism Speaks: What are some signs that families and their doctors can look for if they think a child has a GI problem?
Dr. Fasano: Besides the obvious signs and symptoms (diarrhea, constipation, and underwear soiling), specific behaviors may point toward GI problems, including vocal behaviors (screaming, frequent clearing of throat, tics, swallowing, sighing, whining, moaning, etc.), motor behaviors (unusual posture, pressure on the belly, wincing, constant eating, gritting teeth, etc.), and/or changes in the overall state (sleep disturbances, non-compliance with requests that typically elicit proper response, increased irritability, etc.).
Autism Speaks: What can families do now if they think their child has a GI problem?
Dr. Fasano: If GI problems are suspected, families should be referred to a pediatric GI specialist familiar with ASD-related GI disorders. One thing to avoid is undertaking any conventional or unconventional remedy to solve their child’s GI issues without medical advice. Any intervention will complicate the interpretation of the underlying GI problems and, therefore, complicate the proper management needed to alleviate the child’s discomfort.
On the Release of the GI Consensus Statement and Recommendations in Pediatrics: The ATN’s role in Moving from Consensus to Evidence
By George J. Fuchs, M.D.
The release today of the consensus statements and recommendations for the evaluation, diagnosis and treatment of gastrointestinal (GI) disorders in Pediatrics provides much needed guidance to clinicians and practitioners involved in the care of children with autism spectrum disorders (ASD) in the recognition, evaluation, and management of abdominal pain, chronic diarrhea, chronic constipation and gastroesophageal reflux disease. Given the difficulties some children with ASD experience in communicating pain or discomfort, these recommendations mark an important step to understand and characterize the manifestation of gastrointestinal complaints in these children. They also serve to bring order to the diagnostic and treatment procedures for parents and physicians. While the expert recommendations break new ground, we anticipate that they are a prelude towards the development of evidence-based guidelines that will standardize care for all children with ASD.
Several of the authors on these two papers, including myself, are pediatric gastroenterologists as well as active members of the GI Committee of Autism Speaks’ Autism Treatment Network (ATN). Through the ATN GI Committee and the federally-sponsored Autism Intervention Research Network on Physical Health (AIR-P), the ATN is turning consensus-based recommendations into ASD-specific clinical evaluation and treatment algorithms. These will be based on data (where it exists) and guidelines for pediatric GI conditions for neurotypical children that we modify for children with ASD, supplemented by expert opinion that supports the effectiveness of the recommended procedures.
The ATN is working closely with the National Initiative for Children’s Healthcare Quality (NICHQ) (http://www.nichq.org/), an organization recognized as expert in pediatric guideline development. Together, we are in progress of piloting of the first developed algorithm which is for the evaluation and treatment of constipation at several ATN member sites. The data we collect from this pilot work and subsequent broad implementation across ATN sites will eventually contribute to the development of evidence-based guidelines. The ATN is a highly unique resource in this effort, in part because of the ATN Registry which collects and analyzes data on over 1700 ATN children with ASD.
The eventual development of ASD-specific evaluation and treatment algorithms for GI disorders and other conditions that trouble children with ASD means that physicians and other care providers who use these algorithms will have greater clarity on the diagnosis, evaluation and treatment of these conditions. For families, these algorithms will provide confidence that a chosen course of action is based on careful testing in clinical practice and greatly increase the likelihood of successful identification and management of their children.
For the time being and until the availability of the ATN evaluation and treatment algorithms, parents are urged to let their children’s doctors know about the release of the important consensus statements and recommendations on-line in Pediatrics so that that they might be applied to their child’s care.
George J. Fuchs, M.D.Dr Fuchs is Professor of Pediatrics, University of Arkansas for Medical Sciences and Medical Director, Gastroenterology, Arkansas Children’s Hospital. He is a member of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, (NASPGHAN), and is the Chair of the Gastroenterology Committee of the Autism Treatment Network.
