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South Carolina is at a crossroads when it comes to providing care to its children with autism spectrum disorder (ASD). It is universally agreed that early intervention leads to improved outcomes, but ASD services are expensive and out of reach for many families. As the Affordable Health Care Act continues to roll out, many more of South Carolina’s children with ASD will become eligible for such services. To help their patients with ASD benefit from this expanded access to treatment, primary care providers will need to be familiar with recommended therapies and interventions and with the governmental and community resources that can provide or pay for them.
The primary pediatric provider offers a medical home for the child with ASD, partnering with parents to ensure that the child receives the services needed at each developmental stage. For toddlers, the emphasis of care will be proper assessment and the provision of early, intensive therapy. For the school-aged child, behavioral issues may come to the fore. For the adolescent, the pediatrician will need to help the family with vocational and housing needs and the transition of care to an adult provider.
As soon as a child screens positive for ASD, and without waiting for a confirmed diagnosis, the physician should refer him or her to the South Carolina Department of Disabilities and Special Needs (DDSN) for early intervention. This could include applied behavioral analysis (ABA), speech, occupational, and other therapies.
For children three years and younger, Baby Net will pay for these services. For children older than three, parents have in recent years been able to apply for a Medicaid waiver program for their child. For those who receive a waiver, up to $50,000 is available for services over the course of three years. Demand for these waivers far exceeds supply—for every child who receives a waiver, two more are wait-listed.
In 2014, the federal government clarified that, under the Affordable Health Care Act, Medicaid is expected to pay for services for children with ASD. To facilitate applications for medically necessary ASD services, South Carolina has established an interim program that is open to Medicaid patients with ASD who are 21 years or younger. Children who are currently wait-listed for a waiver or those whose waiver has expired are eligible. As children with ASD transition to the new program, the waiver program will be discontinued.
Applications for the interim program should be submitted to Pete Liggett, Ph.D., at the South Carolina Department of Health and Human Services, P.O. Box 8206, Columbia, SC 29202-4500 or firstname.lastname@example.org along with required documentation. (For more information, visit https://www.scdhhs.gov/press-release/autism-spectrum-disorder-services-interim-process.)
Applied behavioral analysis
Applied behavioral analysis is the gold standard for ASD therapy. When administered early and intensively, it has been shown to improve social and communication skills in about 50% of children with ASD, enabling them to be “mainstreamed” at school.1 One of the child’s behaviors—either one that needs to change or one that is desired—is analyzed to determine what triggers and reinforces it, and then an intervention is designed to help bring about the desired change. Checklists are used to measure the success of an intervention and to guide future therapy.
Best results are seen when children receive 25 to 40 hours of ABA weekly, ideally delivered in the home. Unfortunately, there is a shortage of adequately trained therapists and not all parents can afford to pay for the recommended hours of therapy. According to Carpenter, “We have had kids who have had amazing outcomes, but my personal observation is that the outcomes are not as good when you are diluting the service.” Expanded Medicaid funding should help more children fully benefit from ABA by offering additional hours of therapy.
Social skills training
Social deficits and challenges making friends are hallmarks of ASD. Social skills training is effective across a wide age range of patients with ASD, especially for adolescents with cognitive abilities in the normal range.2,3 One social skills intervention that has a particularly strong evidence base is the UCLA Program for the Education and Enrichment of Relational Skills (PEERS), a parent-assisted model that has been shown to improve core social deficits for as long as five years after treatment and to significantly reduce both the child’s social anxiety and his or her parents’ feelings of family chaos.4,5,6
MUSC Health’s Project Rex (ProjectRex.org) at the Institute of Psychiatry provides social skills training for high-functioning patients with ASD from age six years through adulthood, along with support and educational programming for their families. The Project Rex clinical team was certified by the UCLA PEERS program in 2014 and is now providing this evidence-based intervention for patients at MUSC Health. Other Project Rex clinical offerings include a yoga group designed for children with ASD, social skills groups for school-aged children, and adult social skills training.
All children with ASD will have difficulties communicating, though the nature of those difficulties can vary widely. Some children will need help with articulation and vocabulary building, whereas high-functioning children, who once would have been diagnosed as having Asperger’s Syndrome, may need help only with the social aspects of communication.
Speech therapy, whether provided in the home, the school, or a center, should begin as early as possible. For very young children (18 months), who are typically nonverbal, speech therapy focuses on augmentative communicating, i.e., teaching the child to use a gesture or a symbol to ask for what he or she wants. Common techniques are baby sign language and picture exchange communication, in which the child expresses a want to a communication partner by handing that person the appropriate picture card (e.g., a card picturing a cookie). For children who have begun to speak, therapy would prioritize articulation and clarity.
Communication devices and apps, such as the many autism apps available for tablets and smart phones, can be very helpful tools for these children, but they should be considered an enhancement of and not a substitution for therapy. Apps such as Proloquo2Go enable children with ASD to communicate their needs by pressing a series of icons to form sentences that are then enunciated by the device.
The occupational therapist assesses the individual child’s strengths and weaknesses and draws up an individualized treatment plan. Because parents know their child and their family best, the therapist works with them to set the priorities for treatment. The therapist can help the child gain better motor control, better manage sensory processing issues, and improve self-care and social skills as well as emotional regulation. New situations can be stressful to children with ASD, who do not like disruptions to their routine. Their stress can be greatly alleviated by visual schedules, which break down an event or task into a sequence of icons and model appropriate behavior in each scenario.
The individualized education plan
The Individuals with Disabilities Education Act requires that an individualized education program (IEP) be tailored for each student with a disability and that education be provided in the least restrictive environment possible. This document helps all of the child’s teachers understand the nature of the child’s disabilities and how to best help him or her learn. The IEP is meant to ensure the child with ASD has access to needed special education classes (e.g., speech and occupational therapy) while also having as much exposure as possible to the mainstream classroom. Even children with high-functioning autism benefit from an IEP, but schools often schools often resist providing one to these children because they are progressing well academically. Physicians should act as advocates for children with ASD and their families by helping ensure that an appropriate IEP is in place.
Addressing behavioral problems
Behavioral issues may come to the forefront of parental concerns as children start school and spend increasing amounts of time in public away from the family. Physicians should be prepared to manage a new disruptive behavior in a child with ASD. Before immediately assuming that a new bad behavior is autism-related, the physician should investigate whether it stems from the child’s frustration at not being able to communicate a health concern. A thorough review of systems will identify any underlying physiological problem. Physicians can help prevent discomfort-triggered disruptive behavior by ensuring that children with ASD are adequately treated for any chronic illness (e.g., allergies, gastrointestinal problems) and that they are receiving routine dental care.
If the behavior manifests at school, the environment should be modified to minimize sensory distress and provide adequate visual supports to orient the child. Providing the child with communication devices could help facilitate expression and relieve frustration at not being understood. The physician may need to ensure that an appropriate IEP is in place or suggest needed modifications. If the child is on medications, possible side effects should be considered and dosage should be checked.
It is also important to ensure that the child is getting enough sleep. Asking children to keep sleep diaries and to improve their sleep hygiene is often all that is required to restore healthy sleep patterns. If problems continue, melatonin or another sleeping medication can be prescribed.
While there are no FDA-approved medications for the treatment of core ASD symptoms, medications for comorbid psychiatric conditions such as attention deficit hyperactivity disorder (ADHD), anxiety, or aggression can be considered. When present together, ADHD and autism are more difficult to diagnose.7 Stimulants have proven effective in treating symptoms of hyperactivity and inattention for children who have both ASD and ADHD, but at lower response rates compared to children without ASD.8,9 Clinicians should be aware that the stimulants as a class can cause decreased appetite, disrupted sleep, irritability, tics, and psychotic symptoms, which are present in a significant number of patients with ASD at baseline. Alpha-agonists such as guanfacine and clonidine can also help reduce the symptoms associated with ADHD and have been shown to have some positive effect on irritability and aggression in several small trials.10-12 The serotonin–norepinephrine reuptake inhibitor atomoxetine can effectively control ADHD symptoms in patients with ASD and is generally well tolerated.13
Although few studies support the use of selective serotonin reuptake inhibitors (SSRIs) in children with ASD for treatment of comorbid symptoms of anxiety, SSRIs may have some positive effect on repetitive behaviors.14 To avoid hyperactivity and mood lability, both potential side effects of SSRIs, it is advised to begin with a low dosage and titrate up slowly. All antidepressants, along with atomoxetine, carry black box warnings from the FDA regarding suicidal thoughts in patients aged twenty-five years and younger. When starting patients with ASD on antidepressant therapy, physicians should follow them very closely, seeing them at least every two weeks for the first month. As noted above, alpha agonists are the first choice for violent behaviors, with neuroleptics and anticonvulsants also showing some efficacy in controlling disruptive behavior.
The neuroleptics aripiprazole and risperidone have both been approved by the FDA to treat agitation and aggression in children with ASD. Because weight gain and diabetes can be a side effect of these medications, lipid and HGbA1c levels should be monitored. Other side effects include daytime drowsiness, rigidity in the jaw or extremities, abnormal involuntary movements, and sialorrhea (i.e., drooling). Because risperidone can cause gynecomastia, prolactin levels should be monitored in patients taking this medication. Anticonvulsants, indicated in children with ASD who experience seizures, can also be used as an adjuvant to neuroleptic therapy to help stabilize mood.
If a medication does not work, confirm that the child is receiving an adequate dosage and that the medication is being taken as directed (e.g., extended-release medications must be taken whole). If no benefit has been achieved with the medication after an adequate trial (3-8 weeks for an antipsychotic or 6-8 weeks for an SSRI) or if the side effect profile is unacceptable, taper the medication and try another family of medications. However, if some improvement has been seen in the targeted symptom, continue the drug and add an agent from another family of medications with proven efficacy for that symptom. For example, prescribe a mood stabilizer to a patient taking an antipsychotic agent for agitation and aggression or an antipsychotic agent to a patient taking an SSRI for anxiety and agitation.
If good control of symptoms is not achieved with these measures, refer the child to a psychiatrist for a psychopharmacological consultation. In South Carolina, these referrals should be made to DDSN psychiatrist Jesse Raley, M.D., through the county Disability Board service coordinator.
The transition from pediatric to adult care can be difficult for patients with ASD as very few adult providers specialize in autism. Until urgently needed training programs in adult developmental disorders are developed, the adult patient with ASD is left with three options: continue seeing his or her pediatrician, seek out a psychiatrist specializing in ASD, or rely on emergency departments (EDs) for care.
Many EDs are not equipped to meet the needs of patients with ASD. The Autism Friendly Healthcare Initiative, led by MUSC Health developmental pediatrician Jane M. Charles, M.D., and Division Chief of Emergency Medicine Edward D. Jauch, M.D., will offer training about how to provide developmentally sensitive and appropriate health care for patients with ASD. This training will first be provided to MUSC Health staff and then offered to the staff of other EDs. To receive certification as “autism friendly,” EDs must ensure that all staff complete the required training, establish “desensitized rooms” where ASD patients can find relief from the sensory overload of the ED, and demonstrate their readiness to treat patients with ASD through an onsite visit.
In addition to facilitating the transition to adult care, pediatricians should inform patients with ASD and their parents about vocational and housing opportunities. The South Carolina Vocational Rehabilitation Department (http://scvrd.net/common/index.php) provides autistic teens and young adults vocational training tailored to their skills and employment goals. Autism Speaks offers an Autism Employment Network and a toolbox for securing housing for people on the autism spectrum (http://www.autismspeaks.org/family-services/housing-and-community-living). Some will be able to live independently, but others will require additional support in group homes or other residential settings. Community-based autism organizations, such as the Lowcountry Autism Consortium (lowcountryautismconsortium.org) and the Lowcountry Autism Foundation (lafinc.org), help families access ASD services and provide them a much-needed social support.
A strong partnership between the pediatrician and parents ensures the best possible transition into adulthood for the child with ASD.
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Date of Release: July 1, 2015
Date of Expiration: July 1, 2017
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Jane M. Charles, M.D., Laura A. Carpenter, Ph.D., McLeod F. Gwynette, M.D., and Kimberly McGhee have no relevant financial relationships to disclose.