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Posts Tagged ‘Medication Decision Aid’

How common are anxiety disorders in people with autism, and are there effective treatments?

January 6, 2012 14 comments

This week’s “Got Questions” answer comes from Rob Ring, PhD, Autism Speaks vice president of translational research.

Without question, anxiety is a real and serious problem for many people on the autism spectrum. We hear this from parents, teachers and doctors, as well as from adolescents and adults with autism spectrum disorder (ASD). This disabling anxiety can take the form of one or more disorders, including panic disorder and phobias.

A recent review of scientific studies on autism and anxiety revealed that we have no clear gauge of how commonly anxiety disorders overlap with autism. A few small, relatively short-term studies have produced starkly different results: from 11 percent to 84 percent. (For comparison, the prevalence of anxiety disorders among the general population is about 18 percent.) A reliable estimate will require a study that tracks many more individuals with autism over longer periods of time and that considers the distinctive way that anxiety oftentimes expresses itself in those affected by ASD.

Fortunately, Autism Speaks is funding the Autism Treatment Network, which collects systematic data on a wide range of medical conditions, including anxiety disorders, in children with ASD.  This data will help us better understand the proportion of people with ASD who are suffering from anxiety symptoms.

Meanwhile preliminary studies have provided insights. They suggest, for example, that adolescents with autism may be particularly prone to anxiety disorders, while younger children on the spectrum may not differ at all from the average population. Some studies likewise suggest that high-functioning individuals on the spectrum experience higher rates of anxiety disorders than do lower-functioning individuals. Still we must emphasize that these results are preliminary. We don’t know nearly as much as we should about how anxiety disorders affect those with autism.

recent review of studies found that behavioral interventions can help many children and adolescents with autism who also struggle with anxiety. Along these lines, some studies  suggest that cognitive behavioral therapy can be particularly helpful for high-functioning adolescents and adults with autism and anxiety. We will explore behavioral interventions further in a future “Got Questions?” blog. My own expertise is in the medical treatment of anxiety in persons with ASD.

Currently, we have no medications approved by the Food and Drug Administration (FDA) expressly for the treatment of anxiety in children, adolescents or adults with autism. Some classes of drugs commonly prescribed for treating anxiety disorders in the general population likewise help some of those on the autism spectrum. These include the selective serotonin reuptake inhibitors (SSRIs) such as Prozac. For those with autism, anxiety drugs are best used in combination with behavioral interventions. Among high-functioning individuals, they may be particularly effective when combined with cognitive behavioral therapy.

However, some doctors report that anti-anxiety medications seem to be less effective overall in people with autism spectrum disorder than they are in the general population. This observation needs to be verified with controlled research. It suggests the possibility that the biological root of anxiety in those with autism may differ from the “norm” and, as a result, may respond best to different treatments.

At Autism Speaks, we are actively supporting research into anxiety disorders and other medical conditions frequently associated with autism. This includes both basic research on the underlying biology of autism and the safe development of drugs that can relieve disabling symptoms and improve quality of life.

If you are considering anti-anxiety medication for a child with autism, our recently published Medication Decision Aid can help you work with your child’s physician to sort through the pros and cons in the context of your values and goals for your child. You can learn more about the medication tool kit and download a free copy, here.

Got more questions? Send them to GotQuestions@autismspeaks.org. And bring them to  our next webchat with Autism Speaks Chief Science Officer Geri Dawson, Ph.D., and  Autism Speaks assistant vice president and head of medical research Joe Horrigan, M.D. More information on their monthly webchats here.


Are there effective medicines for treating core autism symptoms?

December 9, 2011 12 comments


This week’s “Got Questions” answer comes from Joseph Horrigan, MD, Autism Speaks assistant vice president, head of medical research.

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.

My child is sometimes aggressive – what can help?

October 7, 2011 44 comments

This week’s “Got Questions?” response comes from Simon Wallace, PhD, Autism Speaks director of scientific development for Europe.

A few months ago, I was visiting an autism clinic in Albania, one of the underserved countries where Autism Speaks is making a difference through our Global Autism Public Health Initiative. There I met a three-year-old girl receiving a diagnostic assessment for autism. Clearly, she wanted her parents to stop talking to us and take her outside. She kicked her father and bit his hand and then began slapping her own head. This young girl was trying to make her preferences known but lacked speech. Aggression was her way of communicating her needs.

Whatever their age, some individuals on the autism spectrum act out aggressively, and clearly, this can be distressing for everyone involved. In fact, aggression is among the most common challenges reported by parents of children and adolescents with autism.

What can help? I suggest working with your child’s physician and therapists on a four-stage approach to tackling this and other problem behaviors. The four steps are identification, understanding, management, and prevention.

By identification, we mean characterizing the problem behavior. As parents, you can write down the type of aggression your child demonstrates along with the time and setting of when the behavior occurs.

Next comes understanding. Specialists often use tools such as the Functional Behavioral Assessment decipher why a person with autism is behaving a certain way. In other words, what is the function of a given behavior for the person with autism? Is she telling you she doesn’t like what you’re doing?  Is he telling his teacher that the school work is too complex? Does she want something she cannot have? Identifying the “communication” behind the behavior is the first step to teaching appropriate behaviors that can convey the person’s needs and desires.

In addition, underlying problems can trigger aggression. Among those with autism, common triggers include disturbing breaks in routine, lack of sleep, jarring “sensory stimuli” (noises, lights, or smells) or even undiagnosed mental health problems. Clearly, it’s important to look beyond the behavior itself to identify the underlying cause.

When it comes to managing aggression, there are many options. The information you gathered in identifying and understanding your child’s behavior may guide you and your child’s healthcare providers in developing a plan.

An abundance of research supports the effectiveness of Applied Behavior Analysis (ABA) in helping children with autism learn new and effective behaviors—so that aggression is no longer needed to communicate wants and needs. Research as shown that, in many cases, ABA alone is effective in reducing aggressive behaviors.

When ABA is not effective, it is important to consider the possibility of an underlying medical condition. For example, we know that autism is frequently associated with sleep disturbances and gastrointestinal distress. Disrupted sleep is likewise associated with uncontrolled seizures. Addressing these medical conditions can make a difference in reducing aggressive outbursts. Also remember that the sudden onset of aggression may signal that your child is in pain, ill, or simply exhausted.

Medication has been used successfully to reduce aggression and self-injury in both children and adults with autism. Risperidone, in particular, has gone through extensive testing in this regard.  Both risperidone (Risperdal) and aripiprazole (Abilify) are approved by the U.S. Food and Drug Administration (FDA) for treating autism-related irritability, which includes aggression, tantrums, and self-injury. A recent study demonstrated that a combination of parent training (in behavior intervention) and risperidone reduced tantrums and other problematic behaviors in children with autism to a greater degree than did medication alone.

However, the decision whether or not to use behavior modifying medication is can be difficult. Autism Speaks has developed a medication decision aid to help you work with your child’s physician to determine whether this option fits your family’s goals and values. (Available for free download on our Tools You can Use Page.)

Finally we have prevention. Strategies to prevent aggression include working with your child’s therapists and teachers to create calming, predictable, and rewarding environments. Other helpful approaches include visual timetables and structured schedules—both of which can help smooth transitions between activities. Rewarding positive behavior and providing communication tools are additional strategies that many families find helpful.

I hope some of these suggestions help your child and family. And readers, I’d love you to use the comment section to share resources and ideas you’ve found useful.

Your Questions Answered: ATN Toolkits

September 16, 2011 5 comments

Earlier week, Autism Speaks launched two new medical toolkits from its Autism Treatment Network (ATN). (Here’s our related news announcement.) Today, ATN Program Director Nancy Jones, PhD, answers your questions about these important new resources for parents and healthcare providers.

I have heard about the new toolkits but am not sure what they are exactly. How are the medical toolkits different from educational tools like the School Community Toolkit?

Autism Speaks is dedicated to developing resources to help families and individuals with ASD with daily living and healthcare. It does this through various programs including our Family Services department and our Autism Treatment Network (ATN).

All our “toolkits” and “tools” are free resources that families and medical professionals can download from the Autism Speaks website. Each provides information designed to empower families and individuals on the autism spectrum. The many toolkits now available through the Family Services section of the Autism Speaks website are designed to help families and individuals on the autism spectrum manage many of the challenges of daily life. For example, our 100-Day Toolkit guides families through the first hundred days after a child receives a diagnosis of autism spectrum disorder (ASD).

Because of the ATN’s mission—to improve the health and medical care of individuals with autism and their families—the ATN is focused on developing toolkits that focus on health-related issues. This week and over the coming months, the ATN is rolling out a series of these medical toolkits. Our just released medication decision did—“Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their doctor to make decisions that reflect the family’s goals and values for their child.

We’ve also released two versions of our “Taking the Work Out of Blood Work” toolkit—one for parents and one for healthcare providers. Both are filled with information and techniques for managing blood work, including printable materials that can help you prepare your child for a less-stressful, even stress-free, visit. Over the next few months, the ATN will be rolling out more toolkits for parents and healthcare providers. Look for them on the ATN’s “Tools You Can Use” page at the Autism Speaks website. Development of these tools was supported in part by a grant from the Health Resources and Services Administration (HRSA) and was made possible through the Combating Autism Act (CAA).  Please consider supporting the act’s renewal by visiting our

Combating Autism Reauthorization Act Action Center.

How do you select what topics you will develop a toolkit for?  

There are a number of ways that we get ideas for our toolkits. The primary way is direct input from the families and individuals we serve. In addition, ATN clinicians present ideas for topics based on their interactions with families in their clinics and the medical needs they observe. Our aim is that all toolkits respond directly to the needs of our community.

Will these tools be available in other languages?

Yes, most of our tools will become available in languages beyond English, starting with Spanish and French. These versions will come out in the months after each English version is released. Being able to translate these tools is one of the benefits of our HRSA funding. The 100-Day Toolkit is already available in Spanish; call 888-AUTISM2 (888-288-4762) to request a copy from an Autism Response Team coordinator.

If you have suggestions for healthcare tools families need, send us a message at atn@autismspeaks.org. Have more questions about resources? Our Autism Speaks Family Services Team can help! Contact the Autism Response Team (ART) at 888-AUTISM2 (288-4762) or email familyservices@autismspeaks.org.

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