The Interactive Autism Network (IAN), a project collecting information online from families of children with autism spectrum disorders (ASD) throughout the United States, reports on the use of medications. How many children on the autism spectrum are taking one or more medications to alleviate symptoms? What types of medications are being used? What do families report about their experiences with various medications?
IAN is a web project of the Kennedy Krieger Institute sponsored by Autism Speaks.
|Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted over the Internet by parents of children with autism spectrum disorders (ASDs) from the United States who choose to participate. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participating families as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.
We encourage autism researchers investigating these topics to apply for access to the IAN database. Contact researchteam@IANproject.org.
Most of the medications being prescribed for children with ASD are psychotropic, which means “affecting mental activity, behavior, or perception.” These include stimulants (like Ritalin), antidepressants (like Prozac), neuroleptics (like Risperdal), and anticonvulsants (like Depakote). Almost all are being used “off label.” In other words, they have not been approved by the U.S. Food and Drug Administration (FDA) to treat autism spectrum disorder in adults or children, although there is often some basis in the research literature for prescribing them. To actually test a drug and obtain FDA approval is a lengthy and expensive process. So far, only Risperdal (risperidone) is FDA approved for treatment of the irritability associated with autistic disorder in children and adolescents aged 5 through 16 years. (“Irritability,” in this instance, is defined as aggression, self-injury, tantrums, and quickly changing moods.)
Making decisions about whether to try a psychotropic medication, and which type, can be particularly hard for parents. Each child is different, which often means that finding a medication that works to address a child's major difficulty takes some trial and error -- never an enjoyable process. As physicians and parents evaluate a medication, there are two major considerations: effectiveness and side-effects. In brief, are any negative effects outweighed by the good a medication does?
When should children be treated with such medications? As Jacqueline M. Amato, M.D., writes in her article “Red Flags: When to Take Your Child with Autism to a Psychiatrist,” safety is a major consideration. Is a child harming him- or herself or others? Beyond this, medications are considered when a behavior or condition has become severe enough to interfere with a child's life and relationships, ability to learn, or ability to benefit from other therapies.
In the section that follows, we share the experiences of families participating in IAN with regard to medications.
Families participating in IAN Research have reported on more than 300 different autism treatments. When these are grouped into categories, medications -- which have been used 3,140 times by IAN families -- rank first in terms of frequency of use. Any specific medication is used far less than, for example, a school-based intervention such as speech and language therapy. Taken all together, however, medications represent a major treatment type.
What types of medications are children with ASD taking? Based on the IAN data, the vast majority of the medications are psychotropic. Parents have submitted information on about 2,900 stimulants, neuroleptics, anticonvulsants, antidepressants, and anxiolytics, while they have submitted information on only about 200 nonpsychiatric drugs. These nonpsychiatric medications range from antifungals (like Diflucan) to antibiotics, antihistamines, and laxatives.
As psychotropics are by far the most commonly used medications reported, we present additional detail on these in Table 1. For each, the brand name or names are given followed by the generic name in parentheses.
Table 1. Psychotropic Medications Frequently Prescribed for Children with ASD
Because so many of the medications are psychotropic, it is no surprise that 50% of all medications used by children with ASD are prescribed by psychiatrists. Neurologists, who often become involved when children with ASD also suffer from seizures, write 20% of the prescriptions and are the most frequent prescribers of anticonvulsant medications. Developmental and general pediatricians prescribe medications for children with ASD much less frequently, writing 11% of total prescriptions each.
Insurance, whether private (57%), Medicaid (20%), or both (18%), helps to pay for medications in most cases. Only 5% of prescription medications -- psychotropic or otherwise -- are not being covered by any kind of insurance.
Psychotropic Medications: Age Groups and Diagnoses
Table 2. Use of Psychotropic Medications by Children with ASD by Age Group
At first glance, it appeared that children with Asperger's syndrome were nearly twice as likely to be on these medications compared with children with autism or pervasive developmental disorder-not otherwise specified (PDD-NOS). Most of that effect was due to age, however, as the Asperger's children participating in IAN tend to be older, and older children clearly take more of these medications than do younger children. Once we adjusted for age, it was only among children aged 6 through 11 that those with Asperger's were more likely than those with autism or PDD-NOS to be taking psychotropic medications.
About 62% of parents felt that the use of a psychotropic medication they were trying for their child came with little or no risk. Parents felt there was higher risk associated with the neuroleptics than with other categories of medication. This may be because these medications, also used to treat schizophrenia and bipolar disorder, may seem more frightening than a drug commonly used to treat, say, attention-deficit hyperactivity disorder.
Fully 80% of parents said they expected at least a moderate level of improvement when putting their child on a new medication. Likewise, the vast majority reported that the medications tried had led to improvement in their children. (See Table 3.)
Table 3. Parents' Evaluation of Psychotropic Medications by Category
Please note that the information reported here reflects only parents' evaluation of current treatments. Because any treatment a child is currently receiving must be considered worthwhile by parents, we expect ratings to be fairly high at this point. As data are collected over time, and families can report on treatments they have dropped, there likely will be more negative reports.
In conclusion, the vast majority of medications being used to treat ASD are psychotropic in nature. The use of such medications increases as children age, probably because psychiatric issues are more likely to be clearly identified when children are older. The majority of parents feel there is little risk associated with trying these medications, and many are pleased with the results.
Stay tuned for additional IAN Research findings on a variety of autism treatments!
To Share Your Thoughts About These Findings…
If you have comments and insights about these preliminary findings, please share them in the research-focused IAN Community Discussion Forum under “IAN Research Findings” and then under “Treatments -- 2008.” Your feedback may influence future research.
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