This document addresses pharmacotherapeutic, medical, and clinical rehabilitative treatments and therapies used to treat Pervasive Developmental Disorders (PDD).  PDD's include:

• Autism Spectrum Disorders (or Autistic Spectrum Disorders, ASD) which is a subcategory including autism, Asperger's syndrome, and pervasive developmental disorder NOS
• Childhood Disintegrative Disorders (CDD)
• Rett syndrome

Note: For information on other services that may be provided for pervasive developmental disorders, see:

• BEH.00004 Behavioral Health Treatments for Pervasive Developmental Disorders
• CG-BEH-01 Screening and Assessment Tools for Pervasive Developmental Disorders
• CG-REHAB-04 Physical Therapy
• CG-REHAB-05 Occupational Therapy
• CG-REHAB-06 Speech-Language Pathology Services
• DRUG.00003 Chelation Therapy
• LAB.00016 Fecal Analysis in the Diagnosis of Intestinal Dysbiosis
• MED.00005 Hyperbaric Oxygen Therapy (Systemic/Topical)
• MED.00081 Cognitive Rehabilitation
• REHAB.00003 Hippotherapy

Note: This document does not address Applied Behavior Analysis or Applied Behavioral Analysis (ABA) therapy.  ABA therapy may not be a covered benefit under the health benefit plan.  By way of example only, many benefit contracts only provide benefits for services rendered by licensed clinicians, and many benefit contracts exclude coverage for services that are educational in nature.

Medically Necessary:

Speech therapy interventions to improve verbal and nonverbal communication skills for individuals with autism, Asperger's syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) are considered medically necessary when criteria for speech therapy are met.

Physical and occupational therapy for comorbid physical impairments in individuals with autism, Asperger's syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) are considered medically necessary when criteria for physical and occupational therapy are met.  

Medical therapy, as indicated for comorbid medical conditions in individuals with autism, Asperger's syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS) is considered medically necessary when such treatment would otherwise be considered medically necessary.

Investigational and Not Medically Necessary: 

The following treatments or therapies are considered investigational and not medically necessary for the treatment of autism, Asperger's syndrome, Rett syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (NOS):

1. Chelation therapy
2. Cognitive rehabilitation
3. Elimination diets (e.g., gluten and milk elimination)
4. Facilitated communication
5. Immune globulin infusion
6. Hyperbaric oxygen therapy
7. Nutritional supplements (e.g., megavitamins, high-dose pyridoxine and magnesium, dimethylglycine)
8. Pet therapy (e.g., Hippotherapy)
9. Secretin infusion
10. Spinal manipulation
11. Vision therapy

Autism, Asperger's syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder Not Otherwise Specified (NOS) are complex and multifaceted conditions for which there is no known specific etiology, although there is evidence of a genetic etiology in autism and Rett syndrome. The impairments of these conditions are generally severe, and, given the uncertainty around the cause(s) of these disorders, treatments are not directed at the core pathology, but at the co-morbid medical and behavioral conditions. The medically necessary treatments listed above have validity as components of treating the co-morbidities, and are evidence-based.

There is a wide array of medical, pharmacological, and other treatments proposed for the treatment of Autism spectrum disorders and PDDs.  For the vast majority there is a lack of scientific evidence regarding their effectiveness, safety, relevance, and/or reliability in improving the pathological manifestations of autism, Asperger's syndrome, Rett's syndrome and pervasive developmental disorders.  The items listed under the Investigational and Not Medically Necessary section of the Position Statement are examples of therapies and treatments where the available evidence is currently insufficient.

Description of Pervasive Developmental Disorders (PDD)

The term pervasive developmental disorders (PDD), refers to a group of disorders characterized by delays in the development of socialization and communication skills which are often accompanied by cognitive and language delays.  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.  Autism is the most characteristic and best studied PDD. Other types of PDD include Asperger's syndrome, Rett's syndrome, and childhood disintegrative disorder (CDD).  CDD is a condition similar to autism, but with onset after the age of 3 and is characterized by a period of clearly normal development prior to onset of severe developmental regression and onset of behaviors suggestive of autism. Children with PDD 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 can exhibit unusual behaviors occasionally, or seem shy around others sometimes - without having a PDD.  What sets children with PDDs 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 PDD, there is a lack of social interaction, impairment in nonverbal behaviors, and a failure to develop normal peer relations. A child with a PDD 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.

Description of Autism

Autism is a complex developmental disorder that affects the brain's development in the areas of social interactions and communication.  Symptoms appear in the first 3 years of life, although diagnosis frequently is not made until much later.  Symptoms of autism vary significantly in severity, but there are several core features to the condition, including gross and sustained impairment in reciprocal social interactions, impaired verbal and nonverbal communication, and restricted or repetitive patterns of behavior.

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is 2.  However, some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained.  This is called the regressive or disintegrative type of autism and is seen in a minority of cases.

People with autism may perform repeated body movements, show unusual attachments to objects or have unusual distress when routines are changed.  Individuals may also experience sensitivities in the senses of sight, hearing, touch, smell, or taste.  Such children, for example, will refuse to wear "itchy" clothes and become unduly distressed if forced because of the hyper-sensitivity of their skin or hyper-reactivity to other sensations. This disorder often manifests a co-existing expressive/receptive language disorder and intellectual disabilities.

The exact causes of autism are unknown, although genetic factors are strongly implicated.  A recent study released by the Center for Disease Control and Prevention (2012) indicates that the incidence of Autism Spectrum Disorders was as high as 1 in 88. 

Description of Asperger's Syndrome

Like autism, Asperger's syndrome (AS) is a developmental disorder characterized by impairment in communication skills, as well as repetitive or restrictive patterns of thought and behavior, but without significant language or cognitive delay.  Parents usually sense there is something unusual about a child with AS by the time of his or her third birthday, but typically clinical concern does not arise until the time the child enters a preschool setting.  Unlike children with autism, children with AS retain their early language skills, although their presentation is usually abnormal.  Higher cognitive function tends to be preserved in individuals with AS.  Motor development delays – crawling or walking late, clumsiness – are sometimes the first indicators of the disorder. 

In addition to the preservation of some aspects of language functioning, another of the most distinguishing symptoms of AS is a child's obsessive interest in a single object or topic to the exclusion of any other.  Children with AS want to know everything about their topic of interest and their conversations with others will be about little else.  Their expertise in some areas of interest, high level of vocabulary, and formal speech patterns make them seem like "little professors."  Other characteristics of AS include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior and the inability to interact successfully with peers; problems with non-verbal communication; and clumsy and uncoordinated motor movements.

Children with AS usually have a history of developmental delays in motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment.   They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy. 

The incidence of AS is not well established.  Boys are three to four times more likely than girls to have AS.

Although diagnosed mainly in children, AS is being increasingly diagnosed in adults who seek medical help for mental health conditions such as depression, obsessive-compulsive disorder (OCD), and attention deficit hyperactivity disorder (ADHD).  They should have a childhood history consistent with the diagnosis.  No studies have yet been conducted to determine the incidence of AS in adult populations.

Description of Rett Syndrome

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.

Description of Childhood Disintegrative Disorder

The essential feature of childhood disintegrative disorder (CDD) is a marked regression in multiple areas of functioning following a period of at least 2 years of apparently normal development.  Apparently normal development is reflected in age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.  After the first 2 years of life (but before age 10 years), the child has a clinically significant loss of previously acquired skills in at least two of the following areas:  expressive or receptive language, social skills or adaptive behavior, bowel or bladder control, play, or motor skills.  Individuals with this disorder exhibit the social and communicative deficits and behavioral features generally observed in autism.  There is qualitative impairment in social interaction and in communication, and restricted, repetitive, and stereotyped patterns of behavior, interests, and activities.  The disturbance is not better accounted for by another specific pervasive developmental disorder or by schizophrenia.

Description of Treatments

The treatment of PDDs may take many different approaches, focusing on one of more aspects of the condition being treated.  There is no single treatment that has consistently demonstrated benefit at the core symptoms of these disorders.  Treatments/interventions (such as speech and language therapy) are of greatest potential benefit in the pre-school child, and of very limited value in the older child/adolescent, so that the age of the child is also a factor in determining the appropriateness and necessity of a given treatment.  

A wide variety of medical, pharmacological and other treatments have been proposed for the treatment of Autism spectrum disorders and PDDs.  Unfortunately for the vast majority of them there is a lack of scientific evidence demonstrating any significant health or behavioral benefits.

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

Autism: A developmental disorder that affects 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.

Cognitive rehabilitation: A proposed treatment to pervasive developmental delay syndromes involving psychological therapy.

Educational interventions: Learning interventions that assist children with obtaining knowledge, communication through speech, sign language, writing and other methods and social skills. NOTE: Many benefit contracts exclude coverage for services that are educational in nature.

Elimination diets: A proposed treatment to pervasive developmental delay syndromes involving specialized diets that omit specific foods or food groups such as gluten and milk.

Facilitated communication: A method of communication using aids or alternatives to speech such as sign language, flashcards, communication boards, etc.

Immune globulin infusion: A proposed treatment to pervasive developmental delay syndromes involving the injection/infusion of immune substances known as immune globulins into the body.

Music therapy and rhythmic entrainment interventions: A proposed treatment to pervasive developmental delay syndromes involving the use of music or rhythmic sounds such as from drums.

Pervasive developmental disorder (PDD): A group of developmental disorders, including autism, Asperger's syndrome, and Rett syndrome, that are characterized by dysfunction in parts of the brain controlling social interaction and communications, among others.

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

Secretin infusion: A proposed treatment to pervasive developmental delay syndromes involving the injection/infusion of the hormone secretin into the body.

Vision therapy: A proposed treatment to pervasive developmental delay syndromes that involves focusing an individual's attention on a single visual stimuli in an attempt to improve their attention span and ability to mentally focus their attention.

The following codes for treatments and procedures applicable to this document are included below for informational purposes.  A draft of future ICD-10 Coding (effective 10/01/2014) related to this document, as it might look today, is included below for your reference.  Inclusion or exclusion of a procedure, diagnosis or device code(s) does not constitute or imply member coverage or provider reimbursement policy.  Please refer to the member's contract benefits in effect at the time of service to determine coverage or non-coverage of these services as it applies to an individual member.

When services are Medically Necessary: 

When services are Investigational and Not Medically Necessary:
For the following procedure and diagnosis codes; or when the code describes a procedure indicated in the Position Statement section as investigational and not medically necessary.

Peer Reviewed Publications:

1. Dawson G, Rogers S, Munson J, et al.  Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics. 2010; 125(1):e17-e23.
2. Gutstein, SE, Burgess AF, Montfort K.  Evaluation of the relationship development intervention program.  Autism. 2007; 11(5):397-411.
3. Howard JS, Sparkman CR, Cohen HG, et al. A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Res Dev Disabil. 2005; 26(4):359-383.
4. Rossignol DA.  Hyperbaric oxygen therapy might improve certain pathophysiological findings in autism. Med Hypotheses. 2007a; 68(6):1208-1227.
5. Rossignol DA, Rossignol LW, James SJ, et al. The effects of hyperbaric oxygen therapy on oxidative stress, inflammation, and symptoms in children with autism: an open-label pilot study. BMC Pediatr. 2007b; 7(1):36.
6. Rossignol DA, Rossignol LW, Smith S, et al. Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial. BMC Pediatr. 2009; 13(9):21.
7. Sheinkopf SJ, Siegel B. Home-based behavioral treatment of young children with autism. J Autism Dev Disord. 1998; 28(1):15-23.

Government Agency, Medical Society, and Other Authoritative Publications:

1. American Academy of Child and Adolescent Psychiatry. Practice parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Academy of Child and Adolescent Psychiatry Working group on Quality Issues. J Am Acad Child Adolesc Psychiatry. 1999; 38(12 Supp 1):32S-54S.
2. American Academy of Child and Adolescent Psychiatry. Policy Statement: Secretin in the Treatment of Autism. June 15, 2002. Available at: http://www.aacap.org/cs/root/policy_statements/secretin_in_the_treatment_of_autism. Accessed on May 31, 2012.
3. American Academy of Pediatrics, Committee on Children with Disabilities, The pediatrician's role in the diagnosis and management of autistic spectrum disorder in children, Pediatrics Vol. 107(5):1221-1226.
4. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2006 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders--autism and developmental disabilities monitoring network, 14 sites, United States, 2002. MMWR Surveill Summ. December 18, 2009; 58(SS10):1-20.
5. Canadian Pediatric Society Position Statement. Early intervention for children with autism. Pediatr Child Health. 2004; 9(4):267-277.
6. Centers for Disease Control and prevention. Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008.  March 20, 2012.  Available at: http://www.cdc.gov/mmwr/pdf/ss/ss6103.pdf.  Accessed on May 31, 2012.
7. Centers for Medicare and Medicaid Services. National Coverage Determination for Manipulation. NCD #150.1 Effective date: N/A. Available at:  http://www.cms.hhs.gov/mcd/index_list.asp?list_type=ncd. Accessed on May 31, 2012.
8. Ching H, Pringsheim T. Aripiprazole for autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews 2012, Issue 5. Art. No.: CD009043.
9. Diggle TTJ, McConachie HHR. Parent-mediated early intervention for young children with autism spectrum disorder. Cochrane Database of Systematic Reviews 2002, Issue 2. Art. No.: CD003496.
10. Gold C, Wigram T, Elefant C. Music therapy for autistic spectrum disorder. Cochrane Database of Systematic Reviews 2006, Issue 2. Art. No.: CD004381.
11. Greenspan AI, Brazelton TB, Solomon R, et al. Guidelines for early identification, screening, and clinical management of children with autism spectrum disorders.  Pediatrics. 2008; 121(4):828-830.
12. Hurwitz R, Blackmore R, Hazell P, Williams K, Woolfenden S. Tricyclic antidepressants for autism spectrum disorders (ASD) in children and adolescents. Cochrane Database of Systematic Reviews 2012, Issue 3. Art. No.: CD008372.
13. James S, Montgomery P, Williams K. Omega-3 fatty acids supplementation for autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews 2011, Issue 11. Art. No.: CD007992.
14. Jesner OS, Aref-Adib M, Coren E. Risperidone for autism spectrum disorder. Cochrane Database of Systematic Reviews 2007, Issue 1. Art. No.: CD005040.
15. Millward C, Ferriter M, Calver SJ, Connell-Jones GC. Gluten- and casein-free diets for autistic spectrum disorder. Cochrane Database of Systematic Reviews 2008, Issue 2. Art. No.: CD003498.
16.  Myer SM, Johnson CP; American Academy of Pediatrics Council on Children with Disabilities. Management of children with autism spectrum disorders. Pediatrics. 2007; 120(5):1162-1182.  Available at: http://www.pediatrics.org/cgi/content/full/120/5/1162.  Accessed on May 31, 2012.
17. Nye C, Brice A. Combined vitamin B6-magnesium treatment in autism spectrum disorder. Cochrane Database of Systematic Reviews 2005, Issue 4. Art. No.: CD003497.
18. Williams K, Wray JA, Wheeler DM. Intravenous secretin for autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews 2012, Issue 4. Art. No.: CD003495.

1. International Rett Syndrome Association. Available at: http://www.rettsyndrome.org. Accessed on June 1, 2012.
2. National Institute of Neurological Disorders and Stroke. Asperger's Syndrome - Short Summary. Available at: http://www.ninds.nih.gov/disorders/Asperger/Asperger.htm. Accessed June 1, 2012.
3. National Institute of Neurological Disorders and Stroke. Pervasive Developmental Disorders. Available at: http://www.ninds.nih.gov/disorders/pdd/pdd.htm.  Accessed on June 1, 2012.
4. National Library of Medicine. Medical Encyclopedia, Autism. Available at: http://www.nlm.nih.gov/medlineplus/ency/article/001526.htm  Accessed on June 1, 2012.
5. National Library of Medicine. Medical Encyclopedia, Rett Syndrome. Available at: http://www.nlm.nih.gov/medlineplus/ency/article/001536.htm. Accessed on June 1, 2012.
6. The Nemours Foundation. Pervasive Developmental Disorders. Available at: http://kidshealth.org/parent/medical/learning/pervasive_develop_disorders.html. Accessed on June 1, 2012.

Alternative Communication
Augmentative Communication Aids
Autism
Chelation Therapy
Discrete Trial Training
Globulin Infusion