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Expert advice on a dual autism-CVI diagnosis
School psychologist Alessia Guerriero and OT Nikoletta Livingston share their expertise and advice for students who have autism and CVI.
Many kids with autism also have CVI, but similar traits can make it difficult to pinpoint which condition is causing which behavior. It’s frustrating for parents: You want the most accurate diagnoses and interventions for your child, but you might not be sure how to differentiate between each—and, sometimes, providers aren’t sure, either.
You’re not alone. This is common, but we’re here to help: Alessia Guerriero is a school psychologist at Perkins School for the Blind. Nikoletta Livingston is an occupational therapist at Perkins School for the Blind. Both work closely with children who have both autism and CVI. Here are the facts they want families to know.
It’s not just you: The CVI and autism combination is poorly understood.
“There’s a lot of misunderstanding about CVI. I’ve had parents come to me and say things like, ‘I was told we can’t be diagnosed with autism and CVI’ or, “So-and-so told me my child can’t have an intellectual disability and CVI because the determination can’t be made since the tools are not normed on a CVI population.’
That’s not only incorrect but also harmful in the long run, because students with those disabilities need those diagnoses so they can access the appropriate support in school and beyond. It’s also harmful in the long run, in terms of transition from secondary schooling, because the services provided for visual impairments don’t cover the extensive needs in the same way autism would through the Department of Developmental Services,” says Guerriero.
Just because providers don’t know a lot about autism and CVI co-existing doesn’t mean it can’t happen.
“This is due to a lack of education about low-incidence disabilities. At Perkins, we get so much exposure to this. It’s easy to take our knowledge for granted. But a lot of people see an individual with CVI once a month or a couple of times a year,” they say.
The right diagnostic provider matters—and they do exist!
Finding a provider who has experience with both populations is essential.
“If you’re seeking a diagnosis, consider a neuropsychologist. Developmental pediatricians and neuro-ophthalmologists have the context with these different populations, too,” they say.
For recommendations, join CVI Now Parents on Facebook, which is full of word-of-mouth tips.
“Parents know their children best. Trust yourself, even if you feel dismissed by your provider. You are the expert in your child,” they say.
Suspect CVI? Find a provider in our Perkins CVI Doctor’s Directory.
Autism may mask visual processing indicators for CVI.
“When people are diagnosed with autism, a lot of times some of the more subtle visual processing indicators can get missed because they’re characterized as a social pragmatic issue, or a motivation issue, or a behavioral issue, when somebody might just be missing visual information.
This might look like avoiding eye contact due to prosopagnosia (face blindness) or difficulty with visually processing light and movement. Kids with both CVI and autism can have difficulty processing and modulating sensory stimuli.
Kids might also display a repetitive, narrow, or seemingly fixed interest in a certain object, toy, or color might be because that’s what someone has visual access to. It’s really important to have a provider who’s assessing both sides of the coin,” they say.
Many CVI and autism behaviors overlap, but they can still co-exist—and behaviors often become more apparent with age.
In younger kids, avoiding eye contact, or lack of representational or pretend play, can be signs of both autism and CVI. They might prefer repetitive play. Your child might also show strong preferences for familiar places and often fixate on moving objects.
It can be challenging to tease out which behaviors are caused by autism and which are caused by the visual challenges of CVI when kids are young, but it’s so important to consider that both could be involved, especially as kids get older. In kids with CVI, incidental learning is compromised, which could result in autism-like behaviors.
“With a visual impairment, you lose access to incidental learning opportunities and social cues. We learn so much through the visual system. That’s why it’s so hard to tease this out in early childhood,” Guerriero says.
Don’t assume that your child doesn’t have CVI, or autism, based solely on early childhood behaviors, because visual access affects so much. It’s never too late for a dual diagnosis.
Autism and CVI interventions need to complement one another.
Lots of support for CVI, especially at a young age, is environmental: simplifying spaces, reducing visual clutter, thinking about what you’re presenting and how you’re presenting it, considering sensory overload. Autism intervention needs to be vision-appropriate and accessible, too.
Be open with your provider about how your child uses their vision. Ask for a functional vision assessment and CVI assessment, and make sure you really understand how they see. Can they access images? If so, what type, colors, shapes, and sizes?
“Don’t feel apprehensive to say to your provider: ‘What if we try it this way? I’ve seen my child do X, Y, and Z.’ Parents should rely on their own knowledge base from years of being the primary person with their child, knowing how they use their vision,” they say. “When you provide the accommodations for vision, sensory and visual access may improve. With that, and other appropriate supports, sensory challenges may improve.”
In children with both autism and CVI, it’s important to address both their visual challenges as well as behavior.
“Autism is a set of symptomologies. It’s often characterized by significant challenges with social skills, communication, repetitive behaviors, fixations, and also emotional regulation, though it’s technically not part of the criteria. Emotional regulation significantly impacts your ability to function across settings,” they say.
Sometimes, patience is key—even though it’s hard. Again, you might not realize that your child with CVI also has autism until they get a bit older and certain behaviors become apparent or CVI based accommodations are not enough.
“If your child has been receiving early intervention support for visual access, and you’re really still not seeing any improvement in communication or emotional regulation by the time they turn 8 or 9, and they’re also still exhibiting signs of repetitive behaviors, fixation on certain topics or preferences, rigidity, challenges with changes to routine, that’s a red flag,” they say.
“Sometimes it takes extra years for individuals with visual impairments to access emotional regulation skills, because they might not be able to see how other people calm themselves down. They might not have access to that. But, as they get older, with the right support, you should see some improvement.”
Consult your provider if your child has persistent echolalia (repetition of words), fixations on certain topics or toys, or has challenges making friends and forming connections.
“If a child who has CVI has a strong preference because of familiarity and comfort, that’s one thing. If it starts to become something that’s significantly dysregulating, and your child is having a really hard time moving on, and it consistently causes meltdowns, and the proportionality doesn’t seem quite right? It’s time for parents to start asking more questions,” they say.
You’re the expert on your child: If you observe certain behaviors or struggles, you deserve to speak up.
Guerriero and Livingston often encounter parents who reluctantly set aside worries if a provider doesn’t share their concerns.
“It’s difficult for families to push back if a trusted provider says, ‘You don’t really need to worry about that right now.’ It’s hard to say, ‘No, I think this is really important. I don’t want to wait.’ The flip side is being able to say, ‘We don’t need to jump to a diagnosis right now, but we want to keep an eye on this so it doesn’t fall off the radar,’” they say.
The right diagnosis is essential to ensure access. Some providers may hesitate to complete an evaluation for autism or an intellectual disability due to a visual impairment.
Still, “It’s important to be evaluated, despite the fact that those tools are not normed and validated on people with visual impairments,” say Guerriero and Livingston.
Neuropsych assessments can be a helpful step to understanding other diagnoses. But it’s important to find an evaluator who understands CVI, brain-based visual impairment, and what that means for the actual assessment and interpreting results. This way, an evaluation is “going to give you good information… and help you really understand what’s going on, even if the norms of the results aren’t totally reflective of the population that your child is part of.
“It is really so valuable — and can get you a lot of recommendations, helpful next steps, and access down the line,” they say.
An accurate diagnosis is also empowering.
“There’s a lot of fear around the diagnosis of autism or an intellectual disability. A lot of families that I work with have a hard time accepting those diagnoses. It can be emotional. There’s a lot of social history around autism and intellectual disabilities.” they say.
But the right diagnoses can bring worlds of support and validation.
“I’ve had students say things like: ‘I wish I knew I had autism, because it helps me feel better when something happens, and I know why I have a hard time,” they say. “And it’s so important for them to meet other individuals who are experiencing things similar to them, so they can have conversations and create a community. It’s very empowering to be with peers and not feel like you’re weird or different.”
Remember: Having the right diagnoses, tools for access, and clear documentation of individual needs can set up students for success in the postsecondary world.
- Autism and CVI explained
- Can CVI and autism co-occur? An in-depth analysis from a school psychologist and a Perkins occupational therapist
- Can CVI and autism co-occur? Part 2 is coming soon!
