Article
Can CVI and autism co-occur?
Alessia Guerriero and Nikoletta Livingston explore how autism and CVI can be present simultaneously and why they are often misconstrued for one another.
Vision is intricately involved in early social, cognitive, motor, linguistic, emotional, and behavioral development. Disruption to visual development, including impairments in visual perception and processing, may result in global developmental delays (Chokron et al., 2020). This has significant implications for effective evaluation, diagnosis, and intervention of children with visual perceptual disorders, as well as those with co-occurring neurodevelopmental disorders, such as autism.
As a result, an incredible challenge is presented: how are children with both autism and neurological visual impairments (CVI), identified, evaluated, and supported to achieve access and meaning in their daily life?
While information about both CVI (cerebral/cortical visual impairment) and autism is more accessible to families, educators, and providers, there still exists a misunderstanding of the two diagnoses’ similarities, differences, and comorbidity; in fact, a myth exists that individuals can only be diagnosed with one or the other. The purpose of this article is to explore the current perspectives around CVI and autism, and to debunk the myths and misunderstandings associated with the two diagnoses.
For the purpose of this discussion, neurological visual impairments will be referred to as CVI, and autism spectrum disorder will be referred to as autism. Based on expressed preferences from each disability community, individuals may be referred to with identity-first language (i.e., autistic person, CVIer), as well as person-first language (i.e., individual with CVI or visual impairment).
What is Autism?
Autism is a commonly known neurodevelopmental condition characterized by atypical development in the areas of verbal and nonverbal communication, social interaction, behavioral functioning and sensory and self-regulation (American Psychiatric Association, 2013). The CDC estimates that 1 in 36 children in the United States have a diagnosis of autism (Maenner, et al., 2020). Evidence indicates that autism consists of a spectrum of neurological differences rather than a consistent set of clinical symptomatology. Every autistic individual is unique and may encounter a broad range of sensory, communication, and social experiences. A comprehensive evaluation by a qualified professional is necessary to confirm a diagnosis of autism.
While the experiences of autistic individuals are certainly unique, certain criteria are presented for medical diagnosis. As of the most current edition of the Diagnostic Statistical Manual (DSM 5), specific criteria include:
Challenges with social communication and interactions
- Struggling to initiate or maintain conversations, difficulty understanding social cues, and trouble interpreting facial expressions
- Difficulty maintaining eye contact or avoiding eye contact altogether
- Differences in verbal and nonverbal communication, such as difficulty understanding sarcasm, tone of voice, or idioms
- Difficulty with recognition of personal space and boundaries
- Struggling to understand and recognize emotions in others and with perspective-taking
- Limited initiation of social interactions or conversations
- Difficulty understanding social hierarchies and relationships
- Restricted and Repetitive Behaviors
- Repetitive Movements: Engaging in repetitive movements, such as hand flapping, arm waving, or body rocking
- Restricted Interests: Focusing on specific interests or topics to the exclusion of others
- Hyper- or Hypo-Sensory Sensitivity: Sensitivity to certain sounds, sights, smells, tastes, or textures
- Ritualistic Behaviors such as following a specific routine or insisting on sameness
- Self-Stimulatory Behaviors (stimming through various means: vocally, self-hugging, spinning, or tapping)
- Other indicators might include:
- Delays or difficulties with speech and language
- Delays or difficulties with motor skill development
- Sleep disturbances
- Eating difficulties
- General challenges with emotional regulation
What is CVI?
CVI is a brain-based visual impairment and is currently the leading cause of pediatric visual impairment (Boston Children’s Hospital, 2022). CVI is caused by damage or abnormal development of the brain’s visual pathways, leading to visual processing challenges that cannot be attributed to the ocular structures themselves (Boston Children’s Hospital, 2022).
One study estimated that CVI may affect up 1 in 30 children in mainstream classrooms, however, prevalence data is significantly limited due to emerging diagnostic tools and awareness of CVI by professionals, as well as the exponential rise in the incidence of CVI related to increasing preterm birth survival rates around the world (Williams, et al., 2021). CVI can often go undiagnosed or undetected due to the lack of education and awareness of CVI by medical providers, clinicians, educators, and other support professionals working directly with children.
CVI is recognized by certain hallmark visual behaviors:
- Difficulties with visual attention
- Difficulties with visual recognition
- Difficulties with visual crowding/clutter (simultagnosia)
- Impaired visual fields or fluctuations in visual field use/attention
- Reliance on color/high contrast, or tendency to gravitate toward certain colors
- Difficulty with varying forms of visual presentation (i.e. two-dimensional images, cartoon drawings, etc.)
- Impaired visual motor coordination
- Difficulty with facial recognition (prosopagnosia)
- Sensitivity to, or seeking out, sources of light
- Delayed visual processing time
- Difficulty processing motion (moving objects/people), or a need to move (self or materials) for visual access
- Difficulty processing other forms of sensory input while using vision, or difficulty using vision when processing other forms of sensory input
- Reduced visual curiosity
- Differences in ocular presentation, alignment, and coordination
- Oculomotor dysfunction
Visual processing challenges may vary from day to day, hour to hour, or even minute to minute due to a variety of environmental and internal factors. As noted, vision plays a critical role in global development. Without consistent visual access, development across all domains can be significantly impacted.
What are the similarities between CVI and autism?
“CVI is often misdiagnosed as autism because of overlapping behaviors or symptoms” (VanBergeijk, E. & LaVoie, A., 2024). CVI and autism are both characterized by neurological processing challenges, and both can impact social interactions, communication, sensory processing, visual processing, executive functions and an individual’s ability to self-regulate. The severity of each of these diagnoses can range from mildly impactful to severely impactful on everyday functioning. Both of these diagnoses can impact learning and access across settings.
What does this look like functionally? Some of the most obvious behavioral similarities between autism and CVI include:
- Verbal and nonverbal communication (social cues) skills
- Difficulty with facial recognition of others
- Challenges with motor functions
- Difficulties with visual searching
- Challenges with emotional regulation
- Difficulties with sensory processing
- Learning challenges
- Difficulties completing daily living skills
- “Restricted interests” (i.e. strong color preferences, heavy reliance on routines)
- Difficulty with transition and change
(Chokron et al., 2020)
Considering these implications, it’s not a surprise that the two diagnoses may be misconstrued for one another, or one missed entirely. Which then begs the question:
How are autism and CVI different?
It is critical to examine how CVI and autism present differently, in order to effectively determine whether one or both are a present factor in the evaluation and diagnostic process. A major component in understanding their differences is first understanding the underlying cause of each diagnosis.
CVI is caused by damage or abnormality to the visual processing areas of the brain. Common causes of CVI include, but are not limited to (Boston Children’s Hospital, 2022):
- Hypoxic ischemic encephalopathy
- Periventricular leukomalacia (PVL)
- Traumatic brain injury
- Neonatal hypoglycemia, infections (e.g. viral meningitis)
- Epilepsy
- Metabolic disorders
- Maternal drug use
- Cardiac arrest
- Genetic conditions
Autism, on the other hand, “is a broad range of conditions that affect communication and behavior, usually appearing by age 2… but the causes are not well-understood” (U.S. Department of Health and Human Services).
Research has indicated a range of causes of autism. The factors below are likely to increase a person’s risk for developing autism when in combination with genetic factors (U.S. Department of Health and Human Services):
- Gene changes or mutations
- Advanced parental age at time of conception
- Prenatal exposure to air pollution or certain pesticides
- Maternal obesity, diabetes, or immune system disorders
- Extreme prematurity or very low birth weight
- Any birth difficulty leading to periods of oxygen deprivation to the baby’s brain
Autism and CVI share a number of common characteristics and easily misconstrued parallels.
This can often cause confusion and misdiagnosis for children by educational and medical teams. Additionally, the widely held myth that an individual can only be diagnosed with either CVI or autism adds to the general misunderstanding and results in a lack of early intervention, support, services, advocacy, and resources for the child and the family. Autism, characterized by atypical development across a range of areas, impacts verbal and nonverbal communication, social interaction, behavioral functioning and sensory and self-regulation. Because vision is so complexly involved in one’s global development, it is unsurprising that visual delays may mirror autism-like features. Moreover, the complexity of CVI as a brain-based visual impairment further complicates the diagnostic process due to the similarities between the presentations of CVI and autism, particularly in young children. These include, but are not limited to, difficulties in the areas of emotional regulation, communication, visual and sensory processing, fine and gross motor abilities, and general learning difficulties.
It is critical to recognize how CVI and autism may coexist or impact one another in the educational context, through the process of both evaluation and intervention in the educational context.
Check back for our next article in this CVI and Autism series that explores the foundations of evaluating CVI and autism, educational interventions to support access and well-being, and planning for the future.
Learn more about CVI, visual processing difficulties, and autism:
- New research on the Role of Questionnaires in Eliciting Visual Behaviours in Children with Autistic Spectrum Disorder
- Dr. Rachel Pilling’s webinar: What’s my ViBe?: Visual Behaviours in Autistic Spectrum Disorder
- Boston Children’s Hospital: What is cortical visual impairment?
- Autism Spectrum News: Helping Youth with Autism and Co-Occurring Low Vision and Blindness
Nikoletta Livingston, OT, OTD, OTR, CCVI, is a supervising practitioner and Alessia Guerriero, EdS, NCSP, LED, is a School Psychologist, both in the Secondary program at Perkins School for the Blind, supporting staff working with students ages 14-22 with visual impairments and multiple disabilities.
- Autism and CVI explained
- Expert advice on a dual autism-CVI diagnosis
- Can CVI and autism co-occur? Part 2 is coming soon!
References
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (Fifth Ed.). https://doi.org/10.1176/appi.books.9780890425596
Chokron, S., Kovarski, K., Zalla, T., & Dutton, G. N. (2020). The inter-relationships between Cerebral Visual Impairment, autism and intellectual disability. Neuroscience & Biobehavioral Reviews, 114, 201–210. https://doi.org/10.1016/j.neubiorev.2020.04.008
CVI Scotland. (n.d.) WHAT IS CVI? https://cviscotland.org/documents.php?did=21&sid=338#:~:text=CVI%20can%20cause%20behaviours%20very,as%20being%20those%20of%20CVI.
Boston Children’s Hospital. (2022) Cortical Visual Impairment. https://www.childrenshospital.org/conditions/cortical-visual-impairment#:~:text=CVI%20is%20the%20most%20common,recovery%20of%20vision%20is%20possible.
Maenner, M., Warren, Z., Robinson Williams, A., Amoakohene, E., Bakian, A., Bilder, D., Durkin, M., Fitzgerald, R., Furnier, S., Hughes, M., Ladd-Acosta, C., McArthur, D., Pas, E., Salinas, A., Vehorn, A., Williams, S., Esler, A., Gryzbowski, A., Hall-Lande, J., Nguyen, R.… Zahorodny, W. (2022, March 23). Prevalence and characteristics of autism spectrum disorder among children aged 8 years – autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020. Centers for Disease Control and Prevention. https://www.cdc.gov/mmwr/volumes/72/ss/ss7202a1.htm
Mazel, E., Tibaudo, M., Bennet, R. (n.d.) Understanding the CVI Visual Behaviors. CVI NOW Perkins School for the Blind. https://www.perkins.org/understanding-cvi-visual-behaviors/
U.S. Department of Health and Human Services. (n.d.). Autism. National Institute of Environmental Health Sciences. https://www.niehs.nih.gov/health/topics/conditions/autism
VanBergeijk, E. & LaVoie, A. (2024, January 10). Helping youth with autism and co-occurring low vision and blindness. Autism Spectrum News. https://autismspectrumnews.org/helping-youth-with-autism-and-co-occurring-low-vision-and-blindness/
Williams, C., Pease, A., Warnes, P., Harrison, S., Pilon, F., Hyvarinen, L., West, S., Self, J., & Ferris, J. (2021). Cerebral visual impairment-related vision problems in primary school children: a cross-sectional survey. Dev Med Child Neurol, 63: 683-689. https://doi.org/10.1111/dmcn.14819
