Managing behavior in children with ASD
Submitted by Karen Regan BSN, RN-C
According to the CDC, 1 in 68 children are now being diagnosed with an autism spectrum disorder (ASD). The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) has changed the criteria for diagnosis of ASD. Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) and Asperger syndrome are no longer used. However, there continues to be much variability in the developmental and behavioral functioning and needs of children being diagnosed with ASD. Some children have average or above average IQ scores, but have difficulty with organizational skills; whereas other children with ASD may be non-verbal with extreme aggression. Studies show that 80% of children with an ASD have at least one comorbid mental health disorder. This usually includes anxiety, ADHD, and/or a mood disorder. These behaviors affect personal relationships in the home, the ability to complete activities of daily living, and also affect school performance. A common phone call that we receive from families of children with autism spectrum disorders is that their child has been suspended. The causes for the suspension usually involve aggression towards peers and staff, property destruction, and/or their inability to function and be productive in the classroom. We also receive calls that our patients are being sent home multiple times a week due to hyperactivity and consistently not following directions.
Children with ASD should qualify for an individual education plan (IEP) which dictates what services the child receives, such as speech and occupational therapy, as well as attending special education classes if needed. Some of these students also need paraprofessionals with them for several hours a day in order to complete their work and be safe in the classroom environment, whereas other students only attend school for a couple hours a day due to their inability to function in the classroom for the entire school day. When children are suspended for behaviors related to their diagnoses, many parents feel frustrated with the schools lack of ability to manage these behaviors through a comprehensive behavioral plan that should be included in the IEP. School personnel also may become frustrated with the ongoing challenging behaviors and have exhausted ideas on how to manage the behaviors. This frustration sometimes leads the school to ask the family to seek outside assistance with behaviors, which usually includes medications and behavioral therapy. Unfortunately, many families cannot find appropriate mental health services for their children in the community, and the mental health providers that will see children with ASD often only accept self-pay or take very few insurance plans. The best way to determine how to manage behavior is through a multidisciplinary approach that includes teachers, physicians, nursing, psychologists and social workers.
Unfortunately, many of these children end up in the emergency department for these behaviors due to the lack of community mental health services. These crises visits often times result in unnecessary medications being prescribed for these problematic behaviors. Behavioral therapy, in addition to medications, is usually the most effective way to manage behaviors in children with ASD. However, as noted earlier, many communities do not have practitioners comfortable in the management of these types of problems and/or the family’s insurance does not cover mental health or behavioral services. According to the American Academy of Child & Adolescent Psychiatry (2013), “There is a severe maldistribution of child and adolescent psychiatric services in the U.S., with children in rural areas and areas of low socioeco¬nomic status having significantly reduced access. The ratio of child and adolescent psychiatrists per 100,000 youth ranges from 4.9 in Idaho to 56.9 in the District of Columbia with a national average of 12.9”. This statistic is for general pediatric psychiatrists, not for psychiatrists who specialize and/or accept children with ASD. In my state of Colorado, there are very few psychiatrists who accept children with a diagnosis of ASD, and most of those providers are located in the main metropolitan area. This lack of resources is very stressful for families who live several hours away in rural areas that only have a local mental health board that provides basic mental health services to all age groups. Many of these mental health boards contract with a psychiatrist who travels to their area a few times a month, or they may utilize tele-health for appointments.
Many developmental-behavioral pediatricians often end up prescribing medications for children who do not live within the immediate vicinity of their clinic. Developmental-behavioral pediatricians specialize in children with developmental and behavioral concerns including autism. Many work in tertiary care hospitals and are a part of interdisciplinary teams that evaluate, diagnose and treat children with developmental and behavioral difficulties. Some developmental-behavioral pediatricians also work in community-based private practices. Our hospital is one of the few resources that provide these comprehensive services to families in the Denver metropolitan area, other parts of Colorado, and neighboring states in the Rocky Mountain region, such as Wyoming and Nebraska. Many of our patients who live in rural areas or in other states have primary care providers who are not comfortable managing medications for behavior. Therefore, we provide phone consultation for management of behaviors and medications. Most phone calls and office visits are for behavioral difficulties involving anxiety, aggression, inattention and obsessive thoughts. Nursing is a crucial link between the family and the provider to help assess and evaluate behaviors and the need for medication. Through documentation of telephone calls the nurse can collect information to determine the parental concerns. Behaviors in children with ASD can be caused by medical problems, such as constipation, sleep disruption or dental pain, which needs to be addressed before any other decisions are made regarding medications.
Routine questions around behavior should include: 1) is the behavior new, 2) how long have you seen the behavior, 3) is there a correlation with a time of day and the behaviors, and 4) were there any changes to the child’s environment or routines that could be causing stress. Once this basic assessment is documented, the physician then determines if the need for an appointment is warranted. If the patient comes in for an appointment, they may be placed on medications during the office visit, although the medications may still need titrating and/or complete medication changes within the first few weeks or months of initiation. In our clinic, the physician alerts nursing through our electronic medical record (EMR) that a patient has been started on a new medication. The nurse then calls 1-2 weeks after initiation to see how the child is doing on the medication. The most common medications prescribed in our clinic for behaviors include guanfacine (Tenex), clonidine, ADHD medications, aripiprazole (Abilify) and risperdone (Risperdal). The nurse must ask questions regarding the specific side effects of the medication, usually to include changes in appetite, sleepiness during the day, sleep disturbances at night, and irritability. For antipsychotic medications, questions about extrapyramidal symptoms such as tardive dyskinesia and any other abnormal muscle movements must be documented in the EMR. The physician reviews the documentation and at times will let the nurse know how to adjust medications if needed or the physician calls the family to discuss changing to a new medication. It is helpful for nursing when physicians prescribe a medication on a titration schedule, as we are able to utilize the schedule to determine any medication changes in the first month or two of starting the medication. Insurance verification for some of these medications presents other complicating factors. Nursing is usually able to initiate and complete a prior authorization over the phone by using the physician’s diagnosis and documentation in EMR. Occasionally an appeal needs to be made and the nurse facilitates these by completing all paperwork needed for the physician’s signature. Once an authorization is approved, yearly renewal usually is necessary through the patients insurance.
Collaboration between the nursing staff and physicians is the most efficient and family-centered way to help families struggling with behavioral challenges. Families have a point of contact with the nurse to get their concerns heard and handled in a timely manner. Physicians are able to rely on nursing to collect the needed information so they can determine the appropriate next steps. With the increasing reported incidence of ASD, the developmental-behavioral pediatrician needs to utilize their time as efficiently as possible and reduce the number of unnecessary office visits for these families. Many of our patients who live in rural areas are seen every 3-6 months in clinic for a medication check. Some PCP’s will manage medications once the dosage is stable, although will continue to request the family to schedule an appointment once or twice a year with the developmental-behavioral pediatrician. This collaboration between primary and specialty care helps reduce the family’s expense for travelling, as well as saves healthcare dollars. There is a major need for our country to make mental health care a priority for children with ASD, and to set up stronger systems of care. In the interim, nursing has a significant role in the care of patients with ASD through good telephone triage, documentation of behaviors, collaboration with physicians, and medication management over the phone in order to help these children maximize their potential in their daily lives.
- American Academy of Child & Adolescent Psychiatry.Child and Adolescent Psychiatry Workforce Crisis: Solutions to Improve Early Intervention and Access to Care. Retrieved 12/23/2013 from www.aacap.org/App_Themes/AACAP/docs/Advocacy/policy_resources/cap_workforce_crisis_201305.pdf
- American Psychiatric Association 2013.DSM-5 Development. Retrieved on December 26, 2013 from www.dsm5.org/Pages/Default.aspx
- Center for Disease Control and Prevention, 2014. Autism Spectrum Disorder: From Numbers to Know-How. Retrieved on April 16, 2014 from www.cdc.gov/about/grand-rounds/archives/2014/April2014.htm
- Freedman, B., Kalb, L.G., Stuart, E.A., Vasa, R., Zablotsky, B. Psychiatric-Related Emergency Department Visits Among Children With an Autism Spectrum Disorder. Pediatric Emergency Care 28(12).1269-76. 2012.