Posts Tagged ‘Autism Treatment Network’

How helpful is the casein-gluten-free diet?

November 11, 2011 58 comments

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

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

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

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

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

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

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

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

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

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

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

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

Autism Speaks ATN Registry Enrolls 4,000th Family

October 25, 2011 16 comments

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


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

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

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

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

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

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

October 14, 2011 30 comments

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

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

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

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

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

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

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

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

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

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

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

Propranolol for Behavior Challenges: Not Yet Ready for Widespread Use

October 10, 2011 17 comments

Posted by Autism Treatment Network Medical Director Dan Coury, MD 

Considerable community and scientific interest has been raised by recent reports that the beta-blocker propranolol improved word use in adolescents and adults with autism spectrum disorder (ASD). It is important to emphasize that this small study does not provide sufficient evidence of effectiveness or safety to support this use of the drug, which is FDA approved to treat high blood pressure. Although we share excitement in seeing medicines evaluated in bona fide clinical studies, families should be strongly cautioned against over-interpreting media reports as endorsement to pursue this treatment for their loved ones–until larger studies show it is safe and effective.

First and foremost, treatment of autism spectrum disorders (ASDs) should include a combination of behavioral and educational interventions. Many children, adolescents, and adults with ASDs also need treatment of associated medical or psychiatric conditions such as gastrointestinal disorders, asthma, anxiety, and symptoms of attention deficit and hyperactivity disorder (ADHD).

While we have strong evidence that our behavioral treatments provide benefit, we need more research on identifying medicines that can help relieve the core symptoms of ASDs and associated behavior challenges. Interest in propranolol began over 20 years ago, with a small study (involving eight adults with autism) that suggested the drug could reduce problematic aggression. In addition, the researchers noted subtle improvements in language and social behavior. They wondered whether this might be related to the known ability of beta-blockers to reduce the symptoms of so-called overarousal. For instance, some musicians and public speakers will take a beta-blocker immediately before a performance to reduce shakiness from stage anxiety.

The authors of that first study called for further research. And the gauntlet was picked up by David Beversdorf, MD, and his associates at the University of Missouri, one of Autism Speaks Autism Treatment Network (ATN) sites. Their latest report enrolled 14 high functioning teens and adults with autism, all of whom used spoken language. They found that, when taking the medicine, some of the individuals used more words over a given period of time. That is, they had greater “word fluency.” On average, the participants showed 25 percent greater word fluency. However, some of the participants spoke fewer words while taking the medication.

What does this mean? These early studies are too small and too limited in their evidence of benefit for us to recommend that adolescents and adults with ASD begin taking this medicine. We know even less about the safety and effectiveness of beta-blocker medications in younger children. As the authors state, further study is needed to confirm both safety and benefits among a wide range of persons with ASD. And if these benefits are confirmed, we need to find ways to identify which people will respond positively to the medication and which will not. Certainly this is not a medication we want to be administering to everyone on the autism spectrum.

These early studies encourage us to pursue further research with propranolol, as we are doing with an increasing number of other medicines that could potentially help relieve the core symptoms of autism–including repetitive behaviors and impaired communication and social behavior. This exciting and encouraging research includes our study of the biological effects and behavioral benefits of both already approved medications and newly developed compounds.

Meanwhile, we have two FDA-approved medications for treating autism-related irritability that includes aggressive behavior and tantrums. They are risperidone and aripiprazole, both of which influence brain levels of the biochemical serotonin. Newer studies are looking at alternative medicines that affect other brain pathways. Early animal research with these compounds has been promising, and studies are now underway in people.

Bottom line: Studies such as Dr. Beversdorf’s are helping us better understand brain function in persons with ASD. This and related studies will ultimately lead us to new treatments and better outcomes. Until then, please stay tuned.

Autism and ADHD

October 4, 2011 54 comments

Posted by Andy Shih, Ph.D., vice president of scientific affairs for Autism Speaks

As researchers and parents, we’ve long known that autism often travels with attention deficit and hyperactivity disorder (ADHD). What we haven’t known before is why that is. Also, few studies have examined how ADHD affects the quality of life of those with autism.

In the past month, two studies have come together to help connect our understanding of autism with behavioral issues such as hyperactivity and attention deficit. The first study looked at gene changes in ADHD and autism. The second looked at how frequently parents see the symptoms of ADHD in their children and how seriously these symptoms affect their children’s daily functioning and quality of life.

The upshot of the first study is that the genetic changes seen in children with ADHD often involve the same genes that are associated with autism. This finding helps explain why children with autism often have ADHD symptoms. In other words, if these disorders share a genetic risk factor, it’s logical that they often occur in the same individuals. Genetic insights, in turn, can help scientists understand underlying causes and, so, may improve how we diagnose and treat these issues.

The second study, described in our science news section, helps clarify both how commonly children on the autism spectrum are affected by ADHD symptoms and documents how this affects their daily function and quality of life. Perhaps the most notable observation was that, even though over half of the children in the study had ADHD symptoms that worsened both daily function and quality of life, only about 1 in 10 was receiving medication to relieve such symptoms.

Clearly, we need more research on whether standard ADHD medications benefit children struggling with both autism and hyperactivity and attention deficits. However, studies have long shown that these medications improve the quality of life of many children with ADHD alone. Autism specialists such as Dan Coury, M.D., medical director of Autism Speaks Autism Treatment Network (ATN), recommend that parents discuss with their child’s physician whether a trial of such medications could be of benefit. (Dr. Coury co-authored the second study.)

On a deeper level, this research raises a question: Why is it, given the same genetic changes, some children develop autism alone, some develop autism and ADHD symptoms, and some develop neither—or something completely different?

I and other geneticists have seen how a given genetic change can alter normal development in various ways—if it does so at all. We have good evidence, for example, that outside influences affect how and whether autism develops in those who are genetically predisposed to it. These influences include a variety of stresses and exposures during critical periods of brain development—particularly in the womb and around the time of birth.

Still, by better understanding how altered genes produce symptoms—be they hyperactivity or social difficulties—we gain important insights into how to develop treatments that can improve the daily function and quality of life of those affected.

Ultimately there’s no substitute for working with your child’s physician and behavioral specialist to address your child’s behavioral challenges and needs within the context of your goals and values. To this end, the specialists at Autism Speaks Autism Treatment Network have developed a medication decision aid—“Should My Child Take Medicine for Challenging Behavior?”—available for free download on our website. Please let us know what you think.

Family Services Office Hours – 09.28.11

September 29, 2011 6 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

Welcome to Family Services Office Hours! We are here today to answer any questions you might have and help connect you to resources. Let us know how we can help!
Comment From Kelly

Hi, I have a 9 year old son that I believe has aspergers. His current official diagnosis is ADHD but he has so many other symptoms. Cincinnati Children’s assessed him several years ago and told us that he was bi-polar. I’d really like to know someplace that I can take him for a full eval. Can you help?

Hi Kelly! The Asperger Syndrome/High Functioning Autism Tool Kit will be helpful to you. It contains lots of helpful information and resources!
In addition, the Cincinnati Children’s Hospital is now an Autism Treatment Network site. Here is the contact information: Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Contact: Terry Mitchell
Phone: (513) 636-1665
Comment From renaye

I am having a difficult time finding a speech therapist for my grandson who is nonverbal .. none of them take medicaid and there is a waiting list for the one that does.. what do I do.. He is 11 non verbal and we want him to use tap to talk or some assisted device

Hi Renaye! We have a very extensive resource guide on our website that contains lots of speech therapists. You may want to try contacting others in your area to see if they take Medicaid.
If you’re not having any luck through Medicaid, you should also ask the school district for your grandson to be evaluated for his speech and language needs which can be included in the IEP guide. Check it out here!
Comment From Kimberly Rossi

Hello I was looking to find out where I can get information to help a friend of mine a 26 year old male with autism information about dating. He has a belief that “normal” girls won’t date him because he has autism. He says that he wants to date “normal” girls not those with autism. I’m not sure how to help him he refuses to go to any local mixers that happen in the area. Any suggestions?

Hi Kimberly! We also have a Resource Library with lots of general resources. We have 2 different pages you may want to check out, our Asperger Syndrome page, as well as our Adults and Young Adults page. There are tons of helpful resources there.
Comment From renaye

we live in indiana,,, northwest part of the state

Hi Renaye, I still thiink you will want to call Cincinnati Children’s Hospital Medical Center (Cincinnati, OH), and ask if they know of an expert in your local comunity.
For everyone else out there, we have lots of different resources in our Resource Library that cover a wide range of topics, like toys and games, autism apps, magazines, books and much much more!
Comment From Guest

I looking for feeding therapy in Illinois south of Springfield.

Hi Guest! Thanks for joining us. I suggest you search our Resource Guide. We have a category for Diet/Nutrition in there. If that doesn’t help you, I would contact your pediatrician, he or she may have some recommendations for you.
Be sure to consult with your pediatrician, this is a medical issue that requires a team approach.
Comment From Jack Dawson

Hi There! I was wondering when the Family Support Tool Kits are being released? Your Tool Kits have SAVED my family!

Jack we’re SO happy to hear our Tool Kits have been helpful to you! That’s what we’re here for!
Hi Jack- Family Services relased A Granparent’s Guide to Autism last week. We will release Parents, Sibllings and Freinds in the next few weeks.The Tool Kits are specially designed to help with the emotional and support reactions to having a child diagnosised with autism.
All of the Family Services Too kits can be found at; 
Comment From meta kane

I need a school for my son who has autism. My son has a photographic memory.

Hi Meta: You can look in our Resource guide for Private Schools. If you are interested in public school, that is something you will have to work with your IEP team in making an determination of public schools that are available. 
Comment From Dana

I’m wondering if there is a Dallas-area toolkit for the Dental community? Or if there is a group specializing in the ASD population? My stepdaughter has Asperger’s Syndrome.

Hi Dana! We have a great Dental Tool Kit on our website. It has information and helpful tips for families AND dentists. It also has helpful videos. You can see our Dental guide here:
We also have dentists in our Resource Guide that specialize in treating individuals with special needs including autism. Click on your state, then the category Dentists and you can search by your zip code. I hope you find a great one!
Comment From Mari

I live in California and my son is a Jr. in high school. He has not been able to pass the Ca exit exam. What happens next? We would love for him graduate with a diploma and not a certficate.

Hi Mari- I am going to recommend you request a Transition Tool Kit – a special kit for families whose child are transitioning into adulthood. 
As far as your son not passing the exit exam, I would recommend you call an IEP meeting in order to specifically address this issue. Our IEP guideline will be a great resource to check out. 
Comment From Jennifer

My 4 year old was diagnosed with Autism and is in a special needs pre-k. I”m trying to find help with the state laws that are associated with Special Needs Classes. Regarding class sizes, full days/ half days…ect…

Hi Jennifer! We have lots of information about eduation laws in our IEP Guide. You can read our IEP Guide that was written by a professional team of lawyers on our Your Child’s Rights page: You can also search our Resource Guide for other preschools in your area.
Comment From Dana

Your IEP guide is invaluable! We did our first IEP last week, and knew how to advocate for our daughter with Aspergers. Thanks to your site, we were able to include both speech therapy *and* counseling in her IEP, as well as ensuring her caregivers had Autism certifications.

Thanks Dana! I’m so happy that was helpful to you and your family. We have gotten some great feedback!
Comment From Mari

Do you anything about a waiver in Ca?

HI Mari, you can check with your Regional Center. They should be helpful about how to obtain a MediCal waiver. Its great that you are investigating a waiver while your son is making his transition to Adulthood.
Comment From Catherine Ritter

My family needs a good counselor for helping us cope with our eleven year olds AS/OCD. It has been extremely difficult dealing with the anxiety meltdowns that turn violent and destructive. He has a good pshychologist already. Our eight and four year are having a hard time with their brothers behaviors. It is really bad and we are looking into temporary placement outside of our home for him. It is hard to find doctors who can counsel in relations to the spectrum. Any suggestions?

Hi Catherine. I suggest you look to you discuss this with your pediatrician to see if he/she can make a referral to a counselor. You can also search our Resource Guide for psychologists/other professionals in your area who may be able to It is important to make sure this counselor has experience with autism. But those are 2 great places to start!
Keep an eye out for a Sibling Tool Kit we are working on that will come out in October. We also have books for Siblings in our Resource Library which you can see here:
For those of you making comments about issues at school or education-related problems, definitely check out our IEP guide here
Parent involvement is very important in the IEP process and your child’s education. Make sure you advocate for your child’s rights even though the process may be difficult!
Comment From Thereasa

My 6yo daughter was recently diagnosed with Aspergers. Do you have information that is easy to explain to my family so they understand what that means? They tend to be rather anti psychobabble and will not accept this diagnosis.

Hi Thereasa! First off, I suggest you order our Asperger Syndrome/High-Functionig Autism Tool Kit, which we send out for free to families of recently diagnosed children.
We have family tool kits coming out, but it is normal for different family members to respond differently to the diagnosis. It can take some people longer than others to accept it. I suggest you point families to our website information. We’ve suggested that better understanding can lead to more support for you and your family.
Comment From Catherine Ritter

Our pediatrician does not know of one. I already spoke with him last week. ?? I feel so overwhelmed and stressed, because my family is struggling.

Catherine, I am so sorry to hear you are struggling. Feel free to call our Autism Response Team at 888-AUTISM2 or email us at so we can help you.
It may help you to connect with other parents either through support groups or your child’s school. We don’t want you to feel alone. Sharing your feelings with others going through similar times can be extremely helpful.
Comment From Mari

Thank you soo much for all the help! Have a Wonderful Day!

Thanks Mari, we are so happy to help! Hope to see you back next week!
Comment From Willmom

We have noticed that our 4 year old ASD son is becoming much more stubborn. He is melting down with every no any suggestions?

Hello Willmom – I am glad you are asking tis question. Its important to understand and have a plan of action when children are having new behaviors.
You will want to work with a professional, preferably a behavior analyst who is an expert on understating behavior
Our resource guide has a catogory called ABA, take a look!
Comment From michelle

when our son was that age willmom, we found previewing situations that would have no answers helped. such as we are going to the grocery and there will be things that I am going to say no to. you can get 1 thing, if you do not melt down. (of course all of this is in 4 yr old language) it helped some. didn’t get rid of all them..still had some store meltdowns

Thank you Michelle! It is so nice to see moms and other parents talking to each other and sharing stories. That is one of the best ways to get support, by sharing information with others who may be going through similar experiences. As many of you know, there are constant chats happening on our Facebook page and lots of parents have been able to connect and help each other!
Comment From Willmom

Also, our 4 year old son (ASD) is having a very hard time with potty training. Any suggestions?

Comment From Willmom

Thanks for suggestions

Comment From Willmom

Michelle, Thanks for reaching out!

Hi Willmom. There are 2 books that have been submitted to our Resource Library that have been helpful to families who are having difficulty with potty training. Here are the 2 links:
Comment From Jeni

Willmom – the Book Love and Logic help my family tremendously in dealing with my son’s tantrums when he was your son’s age. We also had a 1:1 ABA therapist that would go to the store with us and help guide me through the situation.

The Autism Treatment Network is working on a toilet training tool kit that they hope to have out soon. So keep checking back to our Family Services page for its release date!
Comment From Ashley

I was just wondering if there has been any link in genetic disorders and autism? I’m asking because I have two boys who have mutated “X” chromosomes, and as a result they have “symptoms of autism” they cannot say for sure that’s what it is, but that’s what everyone thinks it is. It was passed on to them through me (I have the exact same genetic make-up) and I am afraid my daughter will have to too (already had her tested, just waiting for the test results). Thanks for your time!

Hi Ashley! That is a great question, but I’m sure you would get a better answer from our Science team. You may want to check out Alycia Halladay’s live chat on siblings and genetics here:
Our science team would be happy to answer your questions They are very helpful!
or you can try for more specific research-related questions.
Comment From Gayle

My grandson lives in NC and has been diagnosed as being on the autism spectrum, adhd and I’m not sure of anything else. He takes medications that are costly and also sees a psychologist for dealing with anger issues. He is 7 years old and does well in school and most of his meltdowns are at home. His parents are separated and my daughter is the sole source of financial support. Are you aware of any no- or low-cost services in NC to assist with his medical costs? My daughter has health insurance but the psychologist specializing in children with autism is out of network and the insurance pays very little. My daughter has to pay more than $135/week for the therapy session and his meds are not in the range of what she can afford. Thank you for any assistance you can provide.

Hi Gayle: You are correct to investigate financial recourses for families. Is your grandson receiving a Home and Community Based waiver? If not, this is the first step you want to take.
There are so many stressors that family’s face, and financial issues are one of the primary ones that we see in families of children with special needs. There are potential sources of aid…. many of them depend on the state in which you’re living. Many of the services in some of the states are provided for through state agencies.
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance. Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
Comment From Guest

hi, i have an 8 year old boy, who has asd and adhd. We have just had our 6 year old duaghter accepted to be screened for autism. shes very intellegent and we feel shows signs of adhd and ocd too. she saves up all her anger, and behaviours for us at home, and we are told, does as she is asked in school! soo frustrating! ive read alot about high functioning girls disgusing their behaviours etc in school, then letting all come out at home.

Hi guest! This is a very common problem reported by parents. We recommend that there by close communication between you and the teacher so you can learn about what the school is doing to get the success they have. Communication is everything when trying to raise a child who may have autism. Remember, this won’t be easy because the school environment is so structured, but it does help to have this information so you can learn from their success.
These issues should also be brought up in the IEP team meeting. The teachers/school professionals should have lots of information for you. It is great when teachers and parents are on the same page.
Thank you everyone for joining us today!! We weren’t able to answer everyone’s questions but I hope all of the participants learned a lot from the questions that we did answer. As always, feel free to call our ART team with questions at 888-AUTISM2. See you next week!!

Has anyone studied how to help toilet-train children with ASD?

September 23, 2011 45 comments

This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center


 Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.

Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success.  Here are some important points:

Toileting Challenges with ASD:
* Physical:  Talk with your doctor about medical reasons that may make toileting more difficult for your child.  These can include constipation, and kidney, urinary tract, or bladder problems.
* Language:  Language delay can make it difficult for a child to ask to use the toilet.  Children may need other methods to communicate their needs.
* Fears:  Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness:  Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets:  Your child may have difficulty toileting in new places—such as school vs. home.

Tips for Parents:
Sit for six:  Set a goal for six toilet sits per day.  Start out slow.  First trips may only last 5 seconds.  Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell:  Take your child to the toilet and tell them it is time to go.  Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead:  Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip.  Talk with other people who work with your child.  Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet.  Be matter-of-fact when accidents happen.
Consider comfort:  Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.

These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.

Please remember: Toileting can be difficult for children with an ASD.  One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.

The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.


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