First, it’s important to note that medicines for treating autism are most effective when used in conjunction with behavioral therapies. Ideally, medicines are a complement to other treatment strategies.
Medicines for treating autism’s three core symptoms—communication difficulties, social challenges and repetitive behavior—have long represented a huge area of unmet need. Unfortunately, few drugs on the market today effectively relieve these symptoms and none of the options most often prescribed by practitioners work well for every individual.
In fact, while the Food and Drug Administration (FDA) has approved two drugs for treating irritability associated with the autism (risperidone and aripiprazole), it has yet to approve a medicine for treating autism’s three core characteristics. Nonetheless, medicines such as risperidone and aripiprazole can be beneficial in ways that can ease these core symptoms, because relieving irritability often improves sociability while reducing tantrums, aggressive outbursts and self-injurious behaviors.
The good news is that the range of medication options may soon change, thanks to recent advances in our understanding of the biology that produces autism’s core symptoms. This has made it possible for researchers to begin testing compounds that may help normalize crucial brain functions involved in autism. Early experiments suggest that several compounds with different mechanisms of action have great potential for clinical use, and many are now in clinical trials. [This link takes you to the search engine of the NIH clinical trial network, with results under the search term “autism.”]
Although these developments are exciting and hold real promise for bettering the lives of people with autism, we will have to wait at least a few more years before we know if any of these drug studies produce enough information on safety and effectiveness to merit FDA approval for the treatment of core symptoms.
Today, most medicines prescribed to ease autism’s disabling symptoms are used “off label,” meaning that their FDA approval is for other, sometimes-related conditions such as attention deficit hyperactivity disorder (ADHD), sleep disturbances or depression. Such off-label use is common in virtually all areas of medicine and is usually done to relieve significant suffering in the absence of sufficiently large and targeted studies.
An example in autism would be the class of medicines known as selective serotonin re-uptake inhibitors (SSRIs), including fluoxetine. Several of these medicines are FDA-approved for the treatment of anxiety disorders and depression, in children as well as adults. Although large clinical trials have yet to demonstrate their effectiveness, parents and clinicians have found that they can ease social difficulties among some people with autism. However, it has proven to be difficult to predict which medicines in this class may produce the greatest benefit for a given patient with autism. Similarly, determining the best dose can be quite challenging.
Another example would be naltrexone, which is FDA-approved for the treatment of alcohol and opioid addictions. It can ease disabling repetitive and self-injurious behaviors in some children and adults with autism.
These medicines do not work for everyone, and all medicines have side effects. And as noted above, each person may respond differently to medicines. In addition, changes in response to a medicine can occur as time goes on, even when the dose is not changed. Over time, some people develop tolerance (when a drug stops being effective) or sensitization (when side effects worsen).
Because using these medications in children and adolescents can be a difficult decision for parents, you may find it helpful to use our Medication Decision Tool Kit, a guide for actively working with a physician to find the approach that fits best with your values and goals. You can download it free here.
These are exciting times in the development of new medicines for relieving autism’s most disabling symptoms, and Autism Speaks is increasing its funding and focus in this promising area, while placing great emphasis on ensuring the safety of promising new medicines. Please stay tuned!
Read more science news and perspective on the Science Page.
In a recent blog post on helping nonverbal children communicate, we let you know that our Autism Treatment Network (ATN) would soon publish a pamphlet on visual supports. Yesterday, we were pleased to release Visual Supports and Autism Spectrum Disorders, available for free download on our website. For perspective on its usefulness, today’s “Got Questions?” comes from the pamphlet’s authors:
Clinical Psychologist Whitney Loring, PsyD, and
Both work within the ATN at the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), in Nashville.
While working with hundreds of families of children with autism spectrum disorders (ASD), we have seen firsthand the benefits of visual supports. For some families, these tools bring immediate improvements in how their child and family function on a daily basis. Others find they need a few weeks working with these supports to see clear benefits emerge. Either way, they report significant improvements in their children’s communication and understanding, as well as increased compliance, adaptive behaviors and independence, along with decreases in challenging behaviors.
We are definitely believers in the power of visual supports!
Yet many of the families who come to us have yet to be introduced to these valuable tools. Some parents have heard that they should use visual supports. But they admit to not exactly understanding the term, where to begin, or why visual supports are important in helping their children communicate and understand others.
Often, we find ourselves explaining visual supports in the midst of answering the many other questions and concerns a family brings to us. As a result, parents may leave our clinic with “visual supports” being just one of many things they’re trying to remember and implement on their own.
Ironically, we came to realize that part of the problem was that we were attempting to explain visual supports quickly and verbally without having a visual way to communicate their importance!
Our answer is the newly released Visual Supports and Autism Spectrum Disorders, a step-by-step, easy-to-understand introduction to visual supports and the ways that parents and other caregivers can begin using them.
The pamphlet provides practical examples of how to begin integrating visual supports into a child’s daily routines. We’ve also included a variety of actual visual supports for parents to print, cut out and use, along with links to resources that provide more detailed information for those who want to go further.
So far, the response from families “test driving” this tool has been overwhelmingly positive, and the enthusiasm is not just from those new to visual supports. Some parents tell us, for example, that the guide helps them explain visual supports to other important adults in their child’s life—from grandparents to teachers and doctors.
We hope this pamphlet will help empower parents in both how they use visual supports and how they expand use among others who care for and work with their children. And we hope you find this tool useful in ways that make a positive difference for your child and your family. Of course, we continue to learn from you, as well. Please let us know more about how your family uses visual supports by leaving a comment on this blog and/or sending us an email at firstname.lastname@example.org.
Development of this tool is the product of on-going ATN activities. To learn more about the ATN or find a site in your area, please visit www.autismspeaks.org/atn. For more tools for parents, grandparents and clinicians or to find resources in your area, also visit our ATN Tool Kits page and Autism Speaks Family Services.
I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.
Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.
But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.
His words produced gasps around the room. My heart sank.
But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.
Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.
It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.
The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.
Never before had the importance of funding research become so clear to me!
Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.
And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.
The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.
We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.
When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.
Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.
For more news and perspective, please visit the Autism Speaks science page.
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.
This week’s ‘Got Questions?’ answer comes from Rob Ring, PhD, Autism Speaks vice president of Translational Research, and Joe Horrigan, MD, Autism Speaks assistant vice president, head of medical research.
To bring readers up to speed, the above question stems from two reports: In July, a group of California researchers reported a modest increase in the risk that a child would develop autism if his or her mother took selective serotonin uptake inhibitors (SSRIs) during pregnancy. The results were based on a very small sample of children exposed to antidepressants during the time their mothers were pregnant—just 20 children with autism compared to 50 without autism. This past month, another team of scientists reported that rats fed SSRIs as newborn pups exhibited abnormalities in brain development.
Given the great hunger for information about what causes autism, both studies made headlines. Unfortunately, the media stories may have served to alarm without putting these early and inconclusive scientific findings into perspective.
First and foremost, research with animals and investigations looking at a small number of cases are both important for guiding larger, more informative studies. But in and of themselves, these two particular studies don’t come close to reaching the bar at which scientific evidence is reliable enough to warrant a change in behavior. We feel this is particularly true of important medical decisions such as the need to treat depression, which can be a serious and life-threatening illness.
Take, for instance, the small number of children in the California study. This small “sample size” increases the likelihood that the results were due to chance or other unrelated factors. In other words, they may not represent real differences in risk. It is very common in science for such preliminary findings to vanish when researchers repeat the analysis with a larger, more “statistically significant” number of cases.
In addition, among women taking SSRIs, there may be other, hidden factors responsible for raising autism risk among their future children. For example, we know that anxiety is common among persons with an autism spectrum disorder (ASD). In fact, many of those who learn, as adults, that they have an ASD do so when they seek treatment for anxiety and/or related depression. A common type of medicine prescribed in these instances is SSRIs. We also know that ASDs tend to run in families. So it may be that family genetics—not SSRIs—produced the above-mentioned finding of a modest increase in the prevalence of autism among children whose mothers took these antidepressants during pregnancy.
And the rat study? While it’s useful for guiding the focus of further research, we simply can’t extrapolate results from rats to humans.
Finally, we worry about the consequences of women going off antidepressants when they truly need these medications. Certainly if a woman is pregnant or trying to become pregnant, she should discuss all her medicines with her physician—so that with guidance she can weigh the risks and benefits of continuing or discontinuing one or more of them. Certainly, a woman’s untreated depression can itself pose a danger to her pregnancy or newborn child. The bottom line: If you have concerns regarding your medications during pregnancy, discuss them with your physician, who can help you make the best decision for you and your family.
We hope that we’ve lent some helpful perspective to this issue. Please keep your questions coming (GotQuestions@autismspeaks.org).
Today’s question came in response to my last blog post. In it, I explained that when scientists talk about the “environmental factors” that increase the risk of a disorder, they’re referring to pretty much any influence beyond genetics.
In the case of autism, the clearest evidence of environmental influence seems to surround very early events such as conception, pregnancy and birth. Those with the strongest link include parental age at time of conception (both mom and dad), maternal nutrition or illness during pregnancy, and certain birth complications.
The commenter’s question is a great one that scientists are actively exploring. The short answer is that inherited genes (DNA) and environmental factors seem to interact to influence whether an infant goes on to develop autism. So if the commenter’s twins are fraternal (meaning they share about half their DNA), the difference in their genetic makeup might explain why only one developed autism.
But what if the boys are identical twins–meaning they share exactly the same DNA? In this case, something beyond genes likely accounts for the different outcomes. Comparing the rates of autism among identical and fraternal twins provides clues.
In July, researchers used our Autism Genetic Resource Exchange (AGRE) to complete the largest autism twin study to date. They found a 70 percent overlap in autism among identical twins and a 35 percent overlap among fraternal twins. That overlap between fraternal twins is much higher than the estimated 19 percent overlap between different-age siblings.
These numbers tell us that it’s not always genes alone that determine whether a child develops autism. If it were, two identical twins would always share the same outcome, and the rate of a shared autism among fraternal twins would look more like that for different-age siblings. So we conclude that shared environmental influences are also at play.
Although twins share very similar pregnancy and birth environments, those environments aren’t exactly the same. For example, twins can have different positions in the womb or different placentas, and this can affect such environmental influences as blood and oxygen flow. Indeed, twins often have different birth weights, a known risk factor for autism.
It’s important to remember that “environmental” influences such as these don’t cause autism by themselves. Rather, if a child has a genetic predisposition for developing autism, these influences may further increase the risk.
Autism Speaks continues to fund and otherwise support research on both genetic and nongenetic risk factors for autism. EARLI is a network of researchers who follow mothers of children with autism beginning at the start of another pregnancy. IBIS is a study of early brain development in the younger siblings of children with autism. These studies depend on the participation and support of the autism community. Please visit our Participate in Research page to learn more.
Importantly, these studies provide insights into the underlying biology of different types of autism. This in turn becomes a basis for developing ways to treat and possibly prevent autism. As always, the goal of the research we support is to improve the lives of all on the autism spectrum.
And thanks for the question. Please keep them coming.