Richter-scale tantrums: new hope for exhausted parents.EXCITING NEWS IS EMERGING that could change the lives of many parents of children and adolescents with autism. Extreme tantrums often "run their lives," according to Dr. Lawrence Scahill, Professor of Nursing and Child Psychiatry at the Yale Child Study Center in New Haven, CT. As the Director of Yale's Research Unit on Pediatric Pharmacology (RUPP), Dr. Scahill, along with colleagues around the country, is spearheading research that examines complementary use of the drug Risperadone with a therapist-taught parent behavioral training model.
RUPP researchers hope to improve the lives of families coping with frequently occurring, excessive tantrums. "When tantrums and other challenging social behaviors were out of control, learning could not take place," stated Dr. Scahill. Could opportunities for learning adaptive skills be improved in these children with autism if their tantrums were less frequent? Often, the tantrum is just an 'extreme peaking' in a day filled with other stressful behaviors enacted by the individual with autism. These might include repetitive fixation behaviors (perseveration), such as a child repeating phrases constantly or engaging in repetitive body movements, like rocking or spinning. A child's anxiety might manifest as uncontrollable vocal outbursts. His refusal to cooperate might result in his flopping to the ground or throwing and/or destroying property. One parent described living with this set of conditions as though she were imprisoned: "If set off, before we learned to use 'ABC' data to discover his 'triggers,' our son would tantrum for six hours, screaming continuously. We felt like hostages, never going out because of it," stated Eve Kessler, President of the Special Education PTA (SPED-NET) in Wilton, CT.
Dealing with such extreme behaviors on a daily basis can have catastrophic effects on the caregivers--usually the parents--coping with them. The profile of the parent caregiver of an individual with autism has been compared, by Dr. Timothy Buie of the Massachusetts Hospital for Children, to the profile of a person with post-traumatic stress disorder (PTSD). Dr. Buie, MD, who is also on the faculty at both Harvard and Tufts, is an international speaker on the subject of autism. "His screams could peel the paint off walls," said Mark Durham, a Fairfield, CT parent of twin boys with autism spectrum disorder. Mark described the unpredictability of living with his sons' tantrums: "It felt like a virtual Baghdad, never knowing when the explosions would begin or how catastrophic they would become."
Applied behavior analysis (ABA) has been proven to achieve practical behavioral change in individuals with autism through the skills of a certified behavior analyst; it is the preferred treatment of most autism organizations. But while a skilled behavior analyst can effectively treat and ameliorate the confounding deficits and symptoms of autism, what will it cost? In the U.S., a Master's level candidate applies to receive his certification (BCBA) from the Florida-based Behavior Analyst Certification Board after a rigorous training. So if one could afford an analyst dedicated to his child, where could he obtain one? They are costly, in high demand, and because they are so specialized, they are in short supply.
In his article "Ensuring Appropriate Qualifications for Applied Behavior Analyst Professionals," Professor Emeritus Dr. Gerald L. Shook of Pennsylvania State University notes: "The escalating numbers of people identified with autism and other pervasive developmental disorders have resulted in a corresponding increase in the demand for behavior specialists who can direct and conduct applied behavior analytic interventions." These two immediate obstacles are faced by many families throughout the country and, in fact, the world: qualified behavioral treatment for autism is both hard to come by and expensive. It is not covered by most health insurance plans, though that is slowly changing. Though national standards for behavior analysts working with individuals with autism do not yet exist in the U.S., the National Autism Center is working to change that by 2010. Though one could certainly try to employ its general approaches, ABA is a scientific methodology. It includes the identification of functional relationships between behavior and environments and uses direct observation as well as tools for measurement of behavior, such as charts and graphs. In addition, it assesses functional relationships with the environment. Contextual factors, establishing operations, antecedent stimuli, positive reinforcers, and other consequences are used in order to produce practical behavior change, according to the article "Defining the Field of Behavior Analysis," a document provided online to educate consumers about ABA.
Rupp researchers recognized that many families might not have direct access to centers where most high-level behavioral specialists are located. In addition, the researchers recognized that providing daily, one-to-one behavioral treatment by certified behavioral healthcare providers to families experiencing frequent "Richter-scale" tantrums was financially impractical. Examining these economic and logistical caveats, Dr. Scahill and his Rupp colleagues set out to develop a program that would be, in his words, 'exportable.'
They theorized that solid behavioral training received by parents from wholly qualified individuals (which he defined as "Master's" level), could affect significantly positive behavioral outcomes in their children. However, they also recognized that drug therapy could benefit the child with autism engaging in the tantrums by reducing the tantrums' severity long enough for the behavioral strategies to be engaged.
Prior to Risperadone's approval by the FDA in 2006, there was no drug available that was approved for autism. One other drug, Fluoxetine, has been prescribed "off-label" by physicians to alleviate repetitive behaviors. However, a recent study (SOFIA)--the largest trial ever conducted in patients with autistic disorder--proved the drug to be ineffective for reducing these target behaviors (for more information on the SOFIA study, see the Autism Speaks Web site, February 18, 2009). Risperadone addresses a combination of autism symptoms: "aggression, deliberate self-injury, and temper tantrums in children aged five years and older," according to Dr. Christopher J. McDougle, interviewed in a November 2006 article in Internal Medicine News, authored by Damian McNamara. Dr. McDougle, one of RUPP's principal investigators, is Chairman of the Department of Psychiatry, at Indiana University, Indianapolis.
Drs. Scahill, McDougle, and Michael Aman at Ohio State University planned and completed a study that took behavior analysis principles, taught them to parents (Dr. Scahill noted the primary caregiver was usually the mother), and utilized the drug Risperadone.
"Never, ever, give swimming lessons to a drowning man," recommended behaviorist Linda Grimm of the Ben Haven Center in New Haven, to a room packed with Connecticut parents hoping to learn how to manage the challenging behaviors of their children with ASD. In other words, "don't try to teach someone who is in the middle of a tantrum." Non-compliant behaviors hinder skill acquisition, as well as the successful performance of learned skills. Thus, in extreme cases, medication may provide a window of opportunity for learning to take place. Doctors do not recommend Risperadone for milder behavioral problems. Though side effects of Risperadone--a rare but troubling one being the onset of frequent motor-tics, called tardive diskenesia (TD)--can range from weight gain to nausea, its use is still viewed as an improvement to the near-impossible intensity of frequent, explosive tantrums.
When deciding upon medication, the key word is "appropriate," according to Dr. Edward Kavle, MD and Robert Woodard, APRN from Torrington-Winsted Pediatrics in Connecticut. Addressing an audience of parents recently on the topic "Pediatric Perspectives on Autism Treatment," sponsored by Connecticut Families for Effective Autism Treatment (CT-FEAT), they concurred, "...appropriate medication can reduce or even eliminate some of the psychiatric barriers to learning and functioning."* Doctor and parent must examine symptoms and review goals together before arriving at a treatment. Dr. Kavle stated in his talk that he anticipates RUPP network studies (such as the Yale Study discussed in this article) because they are performed on multiple sites with a high number of individuals.
Setting out to offer relief--both to parents coping with the Richter-scale tantrums and the individuals engaging in them--Scahill and his RUPP colleagues have shown that parents trained in best-practice behavioral response can seize the increased opportunities yielded by the drug effect to teach better functioning, thus improving both their child's adaptive and daily living skills' performance, and their family's quality of life.
In fact, the studies are revealing "out of the ballpark" success rates for adaptive skills' development post-treatment. According to Dr. Scahill, the measurable positive results documented a fifty percent reduction of extreme behaviors. In the six-month study, 49 children received medication only and 75 received the combination of parent training and medication. "We wanted to find out whether Risperidone would 'take the edge off the tantrums' and set the stage for learning in the child," said Dr. Scahill during a December presentation that was part of the Yale Child Study Center's "Surviving Autism Lecture Series" at Greenwich Hospital in Connecticut.
To empower the parents in the study to make spontaneous, effective behavioral treatment decisions under stress, Scahill and his RUPP colleagues provided a core parent training led by qualified therapists that used principles of ABA. The parents attended structured training sessions for 24 weeks. There were 14 sessions, combined with two home visits and two senior therapist consultations. The results of this study carried out by the RUPP group are now being analyzed. Preliminary results appear promising. First, the study showed that the parent training program could be administered faithfully and uniformly in the three research sites that have been mentioned (Yale, Ohio State, and Indiana)--indicating that 'exporting' it to others seems plausible. While further evaluation remains necessary, it appears that the combined treatment has advantages over medication alone for these children with autism and serious behavior problems. "When he was calm enough to respond to our behavioral techniques, he began to learn," said Eve Kessler.
* as quoted in the CT FEAT Newsletter, Winter 2009
An artist and designer in New York City before turning to writing, Lauri Brett's recent life as wife and mother takes place in the wilds of Connecticut. Both of her twin boys, age eight, have mild autism. The national Web site Autism Speaks published her personal essay "The Day He Carried the Flag," in 2008. "Left Behind: A Norwalk Scandal Shows Connecticut Has No Idea How to Educate Kids with Autism," appeared in the Fairfield County Weekly in November. In addition, she has published several articles on writing while at work on her second novel.