Updated on: November 19, 2014

Documenting Autism in ICD-10

Original story posted on: November 17, 2014

Comedian Jerry Seinfeld shocked the nation recently when he announced he “might be on the autism spectrum” and subsequently created an uproar in the autism community.  

Many have viewed his statement as a play for attention and as an insult to those who are severely autistic. However, one must look at the context of the statement before rushing to judgment. Mr. Seinfeld did not claim to have autism; his reflective words implied he may have what John Elder Robison referred to in a recent article in Psychology Today as the Broader Autism Phenotype (BAP)—people who have traits of autism, but not to the degree that they would be diagnosed autistic. According to Robison, millions of people are in this BAP group.

What do we know about autism? According to the National Institutes of Health, autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that one out of 88 children aged eight will have an ASD (Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012). Males are four times more likely to have an ASD than females. Children whose language skills regress early in life (before age three) appear to have a higher than normal risk of developing epilepsy or seizure-like brain activity. 

To date, scientists still are not certain as to what causes autism; therefore, there is no cure. Research findings suggest that both genetics and environment play a role. 

Studies have found patients with autism have irregularities in several regions of the brain. The theory that parental practices are responsible for autism has long been disproved. In addition, many studies have been conducted to determine if vaccines are a possible cause of autism; however, as of 2010, none of the studies have linked autism to vaccines. 

Because there is no cure for autism, therapy and behavioral interventions are designed to remedy specific symptoms and can provide substantial improvement in social development and language skills. Other forms of treatment include medications for treatment of symptoms such as anxiety, depression, or obsessive-compulsive disorder, and antipsychotic medications to treat severe behavioral problems.

Seizures are treated with anticonvulsant drugs, and medications used to treat attention deficit disorder are effective to help decrease impulsivity and hyperactivity in autistic patients. 

So how do we code autism in ICD-10-CM? First, looking up autism in the ICD-10-CM index leads the coder to the Mental, Behavioral, and Neurodevelopmental Disorder Chapter with a default code of F84.0 – Autistic Disorder. The essential modifier under the main term, atypical, leads the coder to F84.9 Pervasive developmental disorder, unspecified. Asperger’s syndrome is coded F84.5 Asperger’s Syndrome. Coding guidelines for category F84 advises the coder to use additional code(s) to identify any associated medical condition and intellectual disabilities.

Associated medical conditions and/or symptoms of autism vary from patient to patient.  Coding for some of the more common associated medical conditions and intellectual disabilities include:

Over- or under-reaction to certain sights, sounds, smells, textures, and tastes

For example, some may dislike or show discomfort from a light touch or the feel of clothes on their skin; experience pain from certain sounds, like a vacuum cleaner, a ringing telephone, or a sudden storm; sometimes they will cover their ears and scream, or have no reaction to intense cold or pain. Researchers are trying to determine if these unusual reactions are related to differences in integrating multiple types of information from the senses. Based on the physician’s findings and documentation, the following codes may be appropriate to use for some of the symptoms:

  • R20.0 – Anesthesia of skin
  • R20.1 – Hypoesthesia of skin
  • R20.2 – Paresthesia of skin (Formiation, Pins and Needles, Tingling skin)
  • R20.3 – Hyperesthesia
  • R20.8 – Other disturbances of skin sensation
  • H93.231 – Hyperacusis, right ear
  • H93.232 – Hyperacusis, left ear
  • H93.233 – Hyperacusis, bilateral
  • H93.239 – Hyperacusis, unspecified ear

Sleep problems

Children with ASD tend to have problems falling asleep or staying asleep, or have other sleep problems. These problems make it harder for them to pay attention, reduce their ability to function, and lead to poor behavior. In addition, parents of children with ASD and sleep problems tend to report greater family stress and poorer overall health among themselves.

  • G47.0 – Insomnia
  • F51.05 – Insomnia due to a mental disorder
  • G47.01 – Insomnia due to a medical condition; code also associated medical condition

Intellectual disability 

Many children with ASD have some degree of intellectual disability. When tested, some areas of ability may be normal, while others—especially cognitive (thinking) and language abilities—may be relatively weak. For example, a child with ASD may do well on tasks related to sight (such as putting a puzzle together) but may not do as well on language-based problem-solving tasks.

Some children with ASD (such as those formerly diagnosed with Asperger’s syndrome) often have average or above-average language skills and do not show delays in cognitive ability or speech.

  • F70 – Mild intellectual disabilities (IQ level 50-55 to approximately 70, Mild mental subnormality)
  • F71 – Moderate intellectual disabilities (IQ level 35-40 to approximately 50-55, Moderate mental subnormality)
  • F72 – Severe intellectual disabilities  (IQ level 20-25 to approximately 35-40, Severe mental subnormality)
  • F73 – Profound intellectual disabilities (IQ level below 20-25, Profound mental subnormality)
  • F78 – Other intellectual disabilities
  • F79 – Unspecified intellectual disabilities (Mental Deficiency NOS, Mental subnormality NOS)


One in four children with ASD has seizures, often starting either in early childhood or during the teen years. Seizures, caused by abnormal electrical activity in the brain, can result in

  • G40.909 – Epilepsy, unspecified, not intractable, without status epilepticus (includes Seizure disorder NOS and Recurrent seizures NOS)

Fragile X syndrome 

Fragile X syndrome is a genetic disorder and is the most common form of inherited intellectual disability, causing symptoms similar to ASD. The name refers to one part of the X chromosome that has a defective piece that appears pinched and fragile when viewed with a microscope. Fragile X syndrome results from a change, called a mutation, on a single gene. This mutation, in effect, turns off the gene. Some people may have only a small mutation and not show any symptoms, while others have a larger mutation and more severe symptoms.

Around one in three children who have Fragile X syndrome also meet the diagnostic criteria for ASD, and about one in 25 children diagnosed with ASD have the mutation that causes Fragile X syndrome

  • Q99.2 – Fragile X chromosome

Gastrointestinal problems 

Some studies have reported that children with ASD seem to have more GI symptoms, but these findings may not apply to all children with ASD. For example, a recent study found that children with ASD may not have underlying GI problems, but that their behavior may create GI symptoms—for example, a child who insists on eating only certain foods may not get enough fiber or fluids in his or her diet, which leads to constipation.

  • K59.00 – Constipation
  • R10 – R19 –Symptoms involving the digestive system and abdomen

About the Author

Kathy Pride, CPC, RHIT, CCS-P, is vice president of professional services for Panacea Healthcare Solutions. Kathy has extensive experience in management, project implementation, coding, billing, physician documentation improvement, compliance audits and education. She is also an approved ICD-10 Trainer through the American Health Information Management Association (AHIMA) and a previous member of the AAPC National Advisory Board (1998 – 2000). 

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Disclaimer: Every reasonable effort was made to ensure the accuracy of this information at the time it was published. However, due to the nature of industry changes over time we cannot guarantee its validity after the year it was published.
Kathy Pride, RHIT, CPC, CCS-P, CPMA

Kathy is a proven leader in healthcare revenue cycle management with extensive experience in management, project implementation, coding, billing, physician documentation improvement, compliance audits, and education. She has trained and managed Health Information Management (HIM) professionals in multiple environments. She is currently the Senior Vice President of Coding and Documentation Services for Panacea Healthcare Solutions. Kathy has provided compliance auditing and documentation education to hundreds of physicians and coders throughout her career.