CG-BEH-15 Activity Therapy for Autism Spectrum Disorders and Rett Syndrome

This document addresses activity therapy (for example, music, dance, art or play therapies) when used to treat Autism Spectrum Disorders (ASDs) and Rett syndrome. ASDs, as defined in the fifth edition of the American Psychiatric Association's (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-5), include disorders previously referred to as:

Note: For information on other services that may be provided for Autism Spectrum Disorders, see:

Activity therapy, including but not limited to music, dance, art or play therapies, is considered not medically necessary for the treatment of Autism Spectrum Disorders and Rett syndrome.

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In May 2013, the American Psychiatric Association (APA) released the 5^th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This edition of the DSM includes several significant changes over the previous edition, including combining several previously separate diagnoses under the single diagnosis of “autism spectrum disorder.” This diagnosis includes the following disorders, previously referred to as: atypical autism, Asperger’s disorder, childhood autism, childhood disintegrative disorder, early infantile autism, high-functioning autism, Kanner’s autism, and pervasive developmental disorder not otherwise specified. All of these conditions are now considered under one diagnosis, ASD. It should be noted that Rett is not included in the new DSM-5 ASD diagnostic group.

The DSM-5 describes the essential diagnostic features of autism spectrum disorder as both a persistent impairment in reciprocal social communication and restricted and repetitive pattern of behavior, interest or activities. These attributes are present from early childhood and limit or impair everyday functioning. Parents may note symptoms as early as infancy, and the typical age of onset is before 3 years of age. Symptoms may include problems with using and understanding language; difficulty relating to or reciprocating with people, objects, and events; lack of mutual gaze or inability to attend events conjointly; unusual play with toys and other objects; difficulty with changes in routine or familiar surroundings, and repetitive body movements or behavior patterns. Children with childhood disintegrative disorder are an exception to this description, in that they exhibit normal development for approximately 2 years followed by a marked regression in multiple areas of function.

Individuals with ASD vary widely in abilities, intelligence, and behaviors. Some children do not speak at all, others speak in limited phrases or conversations, and some have relatively normal language development. Repetitive play skills, resistance to change in routine and inability to share experiences with others, and limited social and motor skills are generally evident. Unusual responses to sensory information, such as loud noises and lights, are also common. Children unaffected by ASDs can exhibit unusual behaviors occasionally or seem shy around others sometimes without having ASD. What sets children with ASD apart is the consistency of their unusual behaviors. Symptoms of the disorder have to be present in all settings, not just at home or at school, and over considerable periods of time. With ASD, there is a lack of social interaction, impairment in nonverbal behaviors, and a failure to develop normal peer relations. A child with an ASD tends to ignore facial expressions and may not look at others; other children may fail to respect interpersonal boundaries and come too close and stare fixedly at another person. Individuals with ASDs may require additional assessments to differentiate between ASDs and other conditions that may co-occur, such as limited intellect.

The exact causes of autism are unknown, although genetic factors are strongly implicated. A study released by the Center for Disease Control and Prevention (2014) indicated that the incidence of ASD was as high as 1 in 68.

Rett syndrome is a disorder of the nervous system that leads to regression in development, especially in the areas of expressive language and hand use. In most cases, it is caused by a genetic mutation. It occurs almost exclusively in girls and may be misdiagnosed as autism or cerebral palsy.

Seventy-five percent of Rett syndrome cases have been linked to a specific genetic mutation on the X chromosome. This gene contains instructions for creating methyl-CpG-binding protein 2 (MeCP2), which regulates the manufacture of various other proteins. Mutations in the MeCP2 gene cause these other proteins to be produced incorrectly, which damage the maturing brain. Studies link mutations in this gene. Most cases of the mutation arise spontaneously without any traceable cause. However, there also seem to be some clusters within families and certain geographic regions, for example Norway, Sweden, and Northern Italy.

A child affected with Rett syndrome normally follows a standard developmental path for the first 5 months of life. After that time development in communication skills and motor movement in the hands seems to stagnate or regress. After a short period, stereotyped hand movements, gait disturbances, and slowing of the rate of head growth become apparent. Other problems may also be associated with Rett syndrome including seizures, disorganized breathing patterns while awake and apraxia/dyspraxia (the inability to program the body to perform motor movements). Apraxia/dyspraxia is a key symptom of Rett syndrome and it results in significant functional impairment, interfering with body movement, including eye gaze and speech.

There are a large variety of potential treatments for ASDs and Rett syndrome, including activity-based therapies such as music, dance, art and exercise therapies. Impairments associated with ASDs and Rett syndrome are often severe, and treatments include attention to comorbid medical and behavioral conditions. Activity therapy uses physical or creative approaches to address therapeutic goals such as improvement in behavioral, social, motor, communicative, and/or cognitive functioning. The medical service is administered to address these therapeutic goals rather than for recreational purposes. Activity therapies are usually individualized, and are generally conducted by professionals trained in the specific discipline such as Master’s level art or music therapists.

Floortime^® is a type of activity therapy that involves caregivers or parents getting ‘down on the floor’ and playing with children. Floortime, part of the Developmental, Individual-differences, and Relationship (DIR) model, is based on the premise that, when caregivers/parents follow the child’s lead and engage in activities that interest the child, emotional relationships between adults and children will improve. These improved relationships will then facilitate the child’s ability to achieve developmental milestones. Parents/caregivers usually receive training and ongoing support or coaching from certified professionals.

In addition to Floortime, there are other parent-mediated interventions such as the Relationship Development Intervention (RDI^®). The RDI program involves training parents or caregivers to improve children’s ability to engage in reciprocal relationships. During RDI sessions, parents guide children in various activities such as playing games or listening to music, sometimes in the presence of an RDI coach. The ultimate purpose of the activities is to improve the child’s ability to bond and communicate with other people.

The use of various activity therapies have been investigated for the treatment of ASDs. Several randomized controlled trials (RCTs) have been published, including evaluating karate (Bahrami, 2016), theater (Corbett, 2016), music (Bieleninik, 2017), dance/movement (Hildebrandt, 2016; Koehne, 2016; Srinivasan, 2015) or Floortime (Casenhiser 2011; Lal 2013; Pajareya 2011; Solomon 2014) interventions. The studies did not consistently find that the interventions provided clinically important benefits. No RCTs have evaluated RDI.

One of the most recent and larger RCTs on activity therapy was published in 2017 by Bieleninik and colleagues. The trial, which was multicenter and assessor-blinded, randomized 364 children with ASD to high-intensity music therapy (n=90), low-intensity music therapy (n=92) or no music therapy (n=182). The music interventions lasted for 5 months and all study participants received enhanced standard care. The investigators did not find an additional effect of music therapy beyond that of enhanced standard care. Compared with baseline, at the end of the 5-month treatment period, there were not statistically significant differences among groups in the primary outcome, the social affect score of the Autism Diagnostic Observation Schedule (ADOS). Findings on the primary outcome were similar at the 12-month follow-up. Moreover, 17 of 20 secondary outcomes did not differ significantly among groups.

As identified above, several RCTs have evaluated Floortime. All of them compared DIR/Floortime plus usual care to usual care alone. Recommended hours per week for parents to engage in Floortime with children was 14 to over 20 hours per week (Casenhiser 2011; Pajareya 2011; Solomon 2014). The fourth RCT (Lal, 2013) evaluated a brief intervention consisting of a total of 20 half-hour sessions. Sample sizes ranged from 126 to 128 participants. Studies have used a variety of outcome measures and, although they have generally found a positive effect of Floortime, the studies did not include a sham or alternative intervention of the same duration or intensity as DIR/Floortime. Without controlling for the potential impact of additional parental support and/or additional time spent interacting with the child, it is difficult to assess the therapeutic effects of DIR/Floortime.

The literature on some activity therapies has been summarized in systematic reviews. In 2017, the Agency for Healthcare Research and Quality (AHRQ) published a comparative effectiveness review on interventions targeting sensory challenges in children with ASDs (Weitlauf). Music therapy was one of the interventions addressed in the review. The authors identified four RCTs and one non-randomized comparative trial evaluating music-based interventions. The studies included a total of 115 children and the duration of treatment ranged from 6 to 20 weeks. Interventions were heterogeneous in that they evaluated different interventions of varying durations and reported on different outcomes. All but one study reported outcomes in the immediate post-intervention period and the other study reported 2 month follow-up data. The authors noted that all studies were small and short-term and stated that no conclusions could be drawn from the literature on the efficacy of music therapy for children with ASDs.

Several systematic reviews have addressed exercise interventions for individuals with ASD (Bremer 2016; Dillon, 2017; Healy, 2018). Most recently, Healy and colleagues (2018) identified 29 studies of exercise interventions that occurred in a physical activity or sports setting in children between 2 and 22 years old. The authors did not require that studies be randomized or controlled, and did not report that any RCTs were identified. Overall, a meta-analysis of the 29 studies found a moderate effect size of exercise interventions (Hedges g=0.62) but the ability to draw conclusions from this analysis is limited since it reports only intervention findings and not a comparison to control group findings.

A non-randomized controlled study was published in 2019 by Chou and colleagues on music therapy for individuals with Rett syndrome and their families. Eleven families enrolled in a twice weekly music therapy program and 12 families did not receive music therapy. After adjustment for baseline severity, the music therapy group had significantly improved scores on outcome measures such as the Vineland Adaptive Behavior Scales and the Rett Syndrome Motor Behavioral Assessment compared with families that did not receive music therapy. A limitation of this study is that it was not randomized and groups may have differed in ways that affect outcomes such as the degree of interaction or level of communication between parents and children.

There are few well-conducted controlled studies evaluating activity therapy for individuals with ASDs or Rett syndrome. Overall, activity interventions have not demonstrated an improvement in the pathological manifestations of ASDs or Rett syndrome in appropriately designed and conducted clinical studies.

Activity therapy: Activities, such as music, art, dance, play and theater, which are used for therapeutic rather than recreational or diversional purposes.

Asperger’s syndrome: A developmental disorder that affects the parts of the brain that control social interaction and communications.

Autism Spectrum Disorders: A collection of associated developmental disorders that affect the parts of the brain that control social interaction and verbal and non-verbal communication.

Childhood disintegrative disorder: A developmental disorder characterized by marked regression in multiple areas of functioning following a period of at least 2 years of apparently normal development.

Rett syndrome: A developmental disorder that affects the parts of the brain that control social interaction, communications, and motor function.

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Subject: Activity Therapy for Autism Spectrum Disorders and Rett Syndrome
Guideline #: CG-BEH-15	Publish Date: 12/16/2020
Status: Reviewed	Last Review Date: 11/05/2020

HCPCS
G0176	Activity therapy, such as music, dance, art or play therapies not for recreation, related to the care and treatment of patient’s disabling mental health problems, per session (45 minutes or more)

ICD-10 Diagnosis
F84.0	Autistic disorder
F84.2	Rett’s syndrome
F84.3	Other childhood disintegrative disorder
F84.5	Asperger’s syndrome
F84.8	Other pervasive developmental disorders
F84.9	Pervasive developmental disorder, unspecified

Status	Date	Action
Reviewed	11/05/2020	Medical Policy & Technology Assessment Committee (MPTAC) review. Discussion/General Information and References sections updated. Reformatted Coding section.
Reviewed	11/07/2019	MPTAC review. Discussion/General Information and References sections updated.
Reviewed	01/24/2019	MPTAC review. Discussion/General Information and References sections updated.
Reviewed	03/22/2018	MPTAC review.
New	02/23/2018	Behavioral Health Subcommitee review. Initial document development. Moved content of BEH.00004 Activity Therapy for Autism Spectrum Disorders and Rett Syndrome to new clinical utilization management guideline document with the same title.