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What is autism? Information for healthcare providers

Autism is a lifelong neurodevelopmental disability characterized by differences in connectivity between brain regions resulting in non-typical patterns of starting, stopping, and scaling brain functions related to movement, cognition, and the processing of sensory information.

Autistic traits are highly variable from person to person. Generally, the above differences in starting, stopping, and scaling brain functions are observed by clinicians as functional differences in communication, posture and body language, interaction with one’s sensory environment, and executive functioning.

For a given person to be considered autistic, that person will experience significant difficulty accessing activities of daily living, education, employment, and/or community participation due to a lack of fit between the individual’s neurocognitive style and their social/physical environment.

Some autistic traits cause inherent functional challenges, such as when a person’s individual neurologic differences limit oral speech production. Other autistic traits, such as atypical body language and/or facial expressiveness due to motor developmental differences are only disabling when stigmatized by others in the autistic person’s environment.

Autism is a dynamic disability, meaning an autistic person’s observed traits will vary depending on contextual/situational factors in their environment as well as internal factors such as fatigue, pain, or hunger. An autistic person’s strengths and challenges will change throughout their lifespan, just as all people experience changes in their functioning in different domains as they age. 

Autism is not uncommon. According to current CDC estimates, about 1 in 44 people are autistic. However, autism is known to be undiagnosed and/or misdiagnosed in females, transgender and non-binary people, and racial minorities. If we extrapolate from some recent research, approximately 1 in 23 people may be autistic. The incidence of autism has not increased over time, but recognition, identification, and understanding of autism has improved since the term autism was first defined.

Autistic people of all ages face difficulty accessing healthcare due to barriers in the domains of communication, sensory processing, and executive functioning.

There is currently a lack of awareness among healthcare providers regarding how to mitigate these common access barriers to care. There is also currently a general lack of provider awareness on how to provide appropriate referrals for common healthcare conditions which are more prevalent in the autistic population, including autoimmune dysfunction, dysautonomias, epilepsy, and hypermobility spectrum conditions, as well as a lack of awareness on the need to screen for common mental health concerns in the autistic population and refer for neurodiversity-affirming mental health care when indicated.

Given the prevalence of autism and the lack of provider awareness of autistic support and accommodation needs, particularly those needed by autistic adults (who are more likely to be undiagnosed), it is imperative that all healthcare providers are provided education on these topics as part of their entry level training.