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.
A 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.
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
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 firstname.lastname@example.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 email@example.com.