Are too many children on the autism spectrum being given psychotropic medication as a way to manage their behavior? When a 2012 study released by the National Institute of Mental Health showed that 56 percent of children and teens on the spectrum are taking one or more meds, critics pounced.
The strongest language comes from self-advocates, who deem the drugs “chemical straitjackets” used to make it easier for parents and teachers to manage challenging kids.
While there is no medication that affects the core symptoms of autism spectrum disorder (ASD) — difficulties with communication, social interaction and restricted, repetitive behaviors — these kids are being treated for conditions often associated with autism, including anxiety, hyperactivity, and aggression.
The drugs clinicians are increasingly prescribing are aimed at curbing a range of problematic and sometimes dangerous behavior patterns that include everything from sleep disorders to violent meltdowns. These episodes aren’t a toddler’s tantrums; autistic children unable to express their anger and anxiety, regardless of how verbal they might be, may become so overwhelmed they put themselves and other family members at risk. Some examples: breaking glass, throwing heavy objects, biting and head-butting. The fact that they often have sensory issues dysregulates them further; if a caregiver yells at a child in an effort to rein in behavior, it tends to have the opposite effect.
Among the critics is Ari Ne’eman, president and co-founder of the Autistic Self Advocacy Network, who argues that “a sizable percentage of the medications being prescribed are serving as a means of chemical restraint, rather than having a legitimate therapeutic purpose.” Ne’eman sees medications as short cuts for more appropriate treatments. “Improving communication supports and educational interventions are far more meaningful and appropriate mechanisms to address behavioral challenges.”
Some clinicians also have concerns. Dr. Mary Margaret Gleason, an assistant professor at Tulane University trained as both a pediatrician and child psychiatrist, worries that limited access to specialists well-versed in the assessment and treatment of autistic children in some parts of the country “means that the only available treatment is pharmacological.”
While Dr. Gleason says she meets many parents who wish to avoid medicating if other interventions might be effective, there are also families who have had very little support or opportunities for other interventions. “These parents can be exhausted, overwhelmed by their child’s symptom pattern, and frustrated by the time and energy it has taken to find a provider who will see a young child,” she says. “For some in this situation, there is a belief that medications will be a quicker solution and will require fewer appointments, less time off from work, and overall less energy.”
For some children, she says, “there may be more effective non-pharmacologic interventions we should be trying first. Obviously, addressing the family’s need for support, respite, and sleep can be valuable approaches for these families.”
Dr. Gleason also notes that when working with autistic children, especially those with limited language, “some of the non-pharmacological treatments for specific disorders may not be as effective, or may require significant modifications.”
Indeed, for many parents medication is a last resort after other therapies, often starting with early interventions, have proven unsuccessful.
Shannon Des Roches Rosa, a co-editor of Thinking Person’s Guide to Autism, says she first “did absolutely everything” to address her autistic son Leo’s violent behavior, including functional behavioral analysis to try to pinpoint his triggers and modify his environment. But by age 8, with Leo breaking TV screens with his fist and posing a danger to family members and himself, Rosa felt she had no choice but to try medication.
Finding the right medication
She found that, as is often the case, finding the right drug came down to trial and error. She first tried Abilify, an antipsychotic found to reduce irritability and aggression; Abilify and Risperdal, another antipsychotic, are the only medications approved by the FDA for the treatment of ASD children. But when Abilify made Leo more anxious, aggressive and “a different child,” Rosa stopped the drug. She waited for it to get out of Leo’s system before trying Risperdal.
“At this point I was pretty despondent,” Rosa says,”but the Risperdal did what it said it would do. Suddenly, Leo could just be himself and be comfortable again. It’s not clear what we would have done if it hadn’t helped him keep control over his aggressive impulses. And it’s also not clear what we would have done if the drug also made him act unlike himself — if it had zombified him, or zeroed out his emotional responses.”
Indeed, most parents who turn to medication are worried about side effects and afraid of rendering their kids unrecognizable. “Most want their children to function better at home and school,” says Dr. Glen R. Elliott, chief psychiatrist and medical director of the Children’s Health Council. “But their concern is that they’re going to lose their child—their child is not going to be the person they’re used to.”
On the other hand, parents whose children are prone to uncontrollable aggression may see a powerful antipsychotic as the only thing standing between being able to keep their at home home and resorting to residential care.
In less extreme situations, some parents turn to medication when co-occuring conditions like ADHD severely limit the child’s opportunities. Jennifer Byde Myers, whose son Jack has autism and ataxic cerebral palsy, as well as ADHD, found Adderall improved his quality of life substantially when he began taking the stimulant medication at 6 years of age.
“Jack’s agitation made it nearly impossible for him to be in school,” says Myers, another editor at Thinking Person’s Guide to Autism. “We had stopped going out to restaurants, stopped doing things with other families, or grandparents, and what life is that? To not be able to learn, or experience new things, or have friends and be loved on by your grandparents? When Jack started the Adderall he was able to comfortably be out and about again. He was calmer, and of course it made parenting easier and less stressful, which does change his life.”
Five and a half years later, she found he no longer needed it. “Jack stopped taking Adderall in August of 2011 purely because I could not get to the doctor’s office to pick up his prescription, and he had an entire week of very positive behavior at school. I didn’t tell school for three more weeks, but he did great, and we have not put him back on.”
She adds: “He may need the medication again when he hits puberty, and we are open to that.”
While parents may not readily admit to it, the decision on medication to help reduce problematic behavior is often linked to the process of getting children accepted by a school. Parents may see medication making the difference between a child being placed a self-contained class of 12 special-needs kids that looks unfortunately like warehousing and a placement in a less-restrictive setting that includes mainstream children, where they may be exposed to more challenging academics and typically developing peer role models.
This notion angers former teacher and advocate Landon Bryce, who blogs at thAutcast. “I think if medication worked as well as doctors, parents and school administrators like to pretend it does, this would make a lot of sense,” he says. “But it doesn’t. You are talking about giving kids meds to make them more manageable. You are talking about making them stupider — I never taught a kid who did not feel that way about his med — in the hope of helping them learn more. That is stupid.”
Dr. Elliott says that with younger children, under 5 or 6, he “absolutely pushes” for other types of behavioral interventions with the child and family first to address problem behaviors. But he acknowledges that society’s expectations and a lack of resources can prevail over this approach. “School tells the family, ‘We can’t keep your child in this classroom because of his behavior, so why don’t you try medication?'” he says. “There can be a real pressure to do it.”
It’s exactly this type of outside pressure that has Bryce up in arms. “I spent 20 years as a classroom teacher,” he says. “I was consistently alarmed at the pressure parents are under to medicate their children and the pressure on kids to continue taking medication that they hate being on. I think medicated kids are easier to control. I think they are much harder to teach.”
Ne’eman and Bryce say they do not oppose medicating children who may pose a danger to themselves or others. But Bryce has been a vocal critic of Risperdal, focusing on the drug’s most notorious side effect, weight gain, which raises obvious health concerns. Rosa acknowledges the problem; she says children on the drug have told her it’s like having “a black hole in their stomach. They’re constantly hungry.” To counter son Leo’s own weight gain, she monitors him carefully. “We don’t keep foods that he obsesses over (like pizza and donuts) in the house, and we try to keep healthy foods like apples in reach.”
“There’s no debating that Risperdal’s use should be approached and evaluated with extreme caution,” Rosa says. “It’s a black box atypical antipsychotic! But it’s wrong to issue a blanket dismissal of its benefits, especially when it’s one of only two drugs FDA-certified for aggressive behavior and irritability in autistic children.”
There are many other good reasons for parents and doctors to be conservative when working with any children, whose brains are developing so rapidly, but especially with those on the spectrum. “Autistic children have a broader range of side effects than do non-autistic individuals,” Dr. Elliott says. “I often think of them as having a ‘raw brain’ effect. It’s like having a sunburn; things that normally wouldn’t affect you, like a pat on the back, do. You have to be more careful getting started.”
Rosa can attest to that. She blogged about the terrible reaction Leo had to the low dose of the anti-anxiety medication Zoloft she tried in attempt to help alleviate his increasing perseverative, or repetitive, behaviors. But the side effects “left him unable to perform a single previously independent routine without help.” A year after taking him off the drug, she still suffers from the serious stress caused by Leo’s ordeal.
Rosa is far from alone. Judy Applebaum, whose son, Jason, 11, was diagnosed with Asperger’s at 3, had no reason to consider medicating until about six months ago when “he became very impulsive and hyperactive seemingly overnight,” leading to a diagnosis of ADHD.
Applebaum said she tried various stimulants, including Vyvanse, Ritalin LA and Focalin. While his teachers said they all helped a little with focus, “the side effects were such a nightmare, we decided to stop them.” They included “extreme anger and irritability, swearing at people, and causing problems on the school bus. His impulse control, which suddenly this year is about zero, went down to about a minus 20 while he was on the meds.” She also tried Intuniv, a nonstimulant; it seemed to work at first but eventually had the same side effects. Once he went off all meds, she says, “his moodiness lifted within 24 hours.”
A psychiatrist who recently evaluated Jason says he never would have put him on medication; instead, he recommends behavior modification. Applebaum agrees; now she’s on a “mad search” for a clinician who offers this therapy and takes her insurance. Still, she hasn’t completely ruled out medicating down the line. “From what I’m seeing,” she says, “it seems that spectrum kids plus puberty equals hormones times 10.”
Another of Dr. Elliott’s concerns: the trend toward multiplying medications. “There are two things I’ve observed over time,” he says. “One, once you start medicine, you’ve very likely to continue using medicines and two, once you’ve started with one medicine, you’re more than likely to use more than one medicine. We’re treating specific symptoms and then we’re adding medication to treat insomnia and then hyperactivity. Raising the dose or trying another drug becomes increasingly tempting and can lead to the ridiculous.”
One area of consensus: the need for more research. “There exists extraordinarily little evidence of the efficacy of most of the medications being utilized,” says Ari Ne’eman. Dr. Elliott agrees: “It’s supposed to be in age of evidence-based medicine but there are very few studies out there that one can rely on.”
Just the same, he says, “One would have to live with one of these kids before even beginning to criticize these parents for an easy fix. Their life and the life of their child are far less chaotic and disrupted and difficult for them.”