Eye exam. Two words that can cause a lot of anxiety in families of autistic patients. Questions may arise about how your child will tolerate the exam and what to do if they need glasses. If your child has communication limitations or sensory sensitivities, you might wonder if they’ll be able to complete an eye exam. Is it even worth making the appointment? Luckily, there are some tips and tricks to help you and your child make the eye exam appointment easier for both of you.
Eye exams are important for children with autism as they are less likely to be screened for visual impairment and more likely to have ophthalmologic disorders. In a research article in Pediatrics, it was found that children with autism are significantly less likely to be screened for vision difficulties during their well-child visits with the pediatrician than their peers without autism (Hoover et al., 2023). This is concerning as children with autism are more likely to need glasses and have a variety of ophthalmologic disorders. For children with autism the prevalence of ophthalmologic disorders is believed to be 13.5% in children with autism in contrast to children without autism or any other developmental disabilities (Chang et al., 2021). These ophthalmologic disorders include amblyopia (lazy eye), strabismus (crossed eyes), nystagmus (rapid uncontrolled eye movement), optic neuropathy (damage to the optic nerve), and retinopathy of prematurity (scarring of the retina). In another study from 2019, ophthalmologic concerns such as refractive errors (needing glasses), strabismus, and amblyopia were found in 71% of children with autism (Chang et al., 2019). Having an eye exam and correcting vision can also impact behavior, as a correlation has been found between children with significant refractive errors and behaviors (Aghai et al., 2016; Mohamed et al., 2019). The eye exam is an essential part of well checks and keeps your child healthy.
Although important, eye exams are not easy. Eye exams are typically long visits with lots of steps and demands on the child. Depending on your child’s developmental level, it might be hard for them to participate in the subjective portions of testing, such as matching shapes and letters. If your child struggles with transitions, eye exams often have many tasks that children need to transition between (Coulter et al., 2015). For children with sensory processing differences, the sensory input during the exam might feel overwhelming. Bright lights shine in their eyes, lots of staff enter and leave the room, and often, doctors touch the head while completing their exam (Parmar et al., 2022). The whole eye exam can be exhausting and leave both the child and caregiver feeling frustrated.
Preparing for the Eye Exam
Even before you arrive at the doctor’s appointment, you can set your child up for success. When you schedule the appointment, try to find a doctor who has worked with people with autism and is familiar with ways to adapt an exam for patients with sensory differences or communication limitations. As you make follow-up appointments, you can request to see the same provider to ensure consistency for your child so that they can become comfortable and familiar with that provider. Another easy adaptation can be to ask for a particular time of day when your child will cooperate best or a quieter time of day when the waiting room won’t be as busy. Before arriving for the appointment, ask the office what to expect for the visit and share potential support needs with the clinic. Some eye exam tests are subjective, while others are objective and don’t require participation from the child. Figuring out these types of exams and what sensory experiences to expect can help you prepare your child before the visit (Parmar et al., 2022). Sharing your child’s support needs can help the clinic prepare to make your visit easier, as they may budget additional time for your child or assign appropriate support staff.
Once you figure out what to expect for the eye exam, you can prepare your child and set them up for success. Preparation books and social stories are a great way to prepare children for new experiences and can help lower anxiety before the exam (Coulter et al., 2015). Some generic books about eye exams that might be helpful include Howard and the Amazing Eye Exam by Michelle Weed and Dr. Catherine McDaniel, Emma Goes to the Eye Doctor by Dr. Claudine Courey and Dr. Gabriella Courey, I Need Glasses: My Visit to the Optometrist by Virginia Dooley and Stephanie Roth, and I Can See Just Fine by Eric Barclay. There are also videos on YouTube about what it’s like having an eye exam and walking a child through what they should expect for their visit. If your child struggles being in new and unfamiliar settings, you can request a tour of the clinic and introduce your child to the setting before the appointment. Typically, part of the test includes matching shapes and letters, so it can be helpful to practice matching with your child prior to the appointment. When you prepare your child for their visit, you are giving them the tools to be successful in their appointment.
Supporting Your Child During the Exam
There are several ways to ease into the appointment, such as bringing items with you. Comfort items like a blanket or favorite stuffed toy can help the child feel more comfortable in an unfamiliar setting. Toys like pop its and fidget spinners can provide distraction during the exam. Demonstration is another helpful tool during visits. Demonstrating the flashlights and other parts of the exam on a baby doll or caregiver is a technique called shaping, which has been found to increase cooperation with eye exams (Coulter et al., 2015). Adaptive sensory environments are another resource that can be helpful in decreasing the anxiety of patients and increasing cooperation in the medical setting (Shapiro et al., 2019; Cermak et al., 2015; Fallea et al., 2022). Simple adaptations like turning down the lights, moving to a quieter room, and limiting staff can ease the time spent in the medical setting. Alternative seating and weighted blankets are another sensory adaptation to increase cooperation. Research has found that in the school setting, alternative seating, such as therapy balls and inflated wobble cushions, increased a child’s engagement and attention (Shilling & Schwartz, 2004; Pfeiffer et al., 2008). In our clinic, we have had a lot of success in using a vibrating cushion to help active and sensory-seeking patients sit still. By providing sensory input while they’re sitting, we’ve found that patients sit still better, which allows the provider to complete the eye exam. We also have weighted lap pads available in the clinic, as research has found a correlation between using weighted blankets and anxiety. We’ve found that it’s a non-invasive way to help the patient sit still during an exam (Eron et al., 2020). Bringing these preferred sensory items and favorite toys to a visit can be an easy way to keep your child comfortable in an unfamiliar setting.
For an initial eye exam, the patient will typically need their eyes dilated as this helps the provider examine the eye and potential prescription needs. It can be helpful to discuss this with the clinic before the visit, as some clinics dilate eyes with drops while others use a spray. If your child might struggle with the stinging sensation of dilation, a helpful tip is to provide alternative sensory input like vibration or deep pressure. Drops can also be administered with the child’s eyes closed. Have the child lay their head back and close their eyes, then administer the drops on the eyelash or the inside corner of the eye. When the child opens their eyes while lying down, the eye drops will naturally go into the child’s eyes. Another idea can be practicing drops at home with regular saline prior to the dilation drops during the clinic visit. At our clinic, we offer the opportunity to split visits. For patients who may struggle with the full visit that is typically 2 hours, we can split it into two appointments. On the first appointment, the child does all parts of the exam that happen before dilation. Then, the family either administers dilation drops at home or they can return on a different day for clinic staff to dilate the child’s eyes and complete the post-dilation part of the exam. With the right adaptations and support, children with autism can be successful with an eye exam.
Setting Your Child up for Success
As the caregiver, you are the expert on your child. It is helpful for staff when you share information about your child and how they can best support your child’s needs. Research has found that patients with individualized care plans have fewer challenges with anxiety and coping (Liddle & Sonnetag, 2020). Sharing information about your child’s expressive and receptive language skills can help staff communicate with your child. It takes teamwork to care for children, so sharing your child’s interests, triggers, and sensory needs can help staff engage with and support your child. As the caregiver, you know what helps your child, and you can empower the staff caring for your child by sharing those helpful strategies with them.
An eye exam can feel overwhelming to families. Fear and stress may lead some families to postpone appointments. Eye exams are so important for children with autism due to the increased risk of eye diseases and the lack of screening tools at the pediatrician for well-child visits. With preparation and adaptations to care, children with autism can successfully complete eye exams in ophthalmology clinics.
Elise Huntley, MA, CCLS, is a Certified Child Life Specialist who supports patients with sensory needs in the outpatient setting. As a member of the child life team at Dayton Children’s Hospital, Elise develops individualized coping plans for patients with developmental disabilities before hospital visits and uses this information to create individualized adaptive sensory environments and provide psychosocial support during hospital encounters. She may be contacted at huntleye@childrensdayton.org.
References
Aghai, G., Dibajnia, P., Ashkesh, E., Nazari, M., & Falavarjani, K. G. (2016). Behavior disorders in children with significant refractive errors. Journal of Current Ophthalmology, 28(4), 223–225. https://doi.org/10.1016/j.joco.2016.07.007
Cermak, S. A., Duker, L. I. S., Williams, M. E., Dawson, M. E., Lane, C. J., & Polido, J. C. (2015). Sensory Adapted Dental Environments to Enhance Oral Care for Children with Autism Spectrum Disorders: A Randomized Controlled Pilot Study. Journal of Autism and Developmental Disorders, 45(9), 2876–2888. https://doi.org/10.1007/s10803-015-2450-5
Chang, M. Y., Doppee, D., Yu, F., Perez, C., Coleman, A. L., & Pineles, S. L. (2021). Prevalence of ophthalmologic diagnoses in children with autism spectrum Disorder using the OPTUM dataset: APopulation-Based Study. American Journal of Ophthalmology, 221, 147–153. https://doi.org/10.1016/j.ajo.2020.08.048
Chang, M. Y., Gandhi, N., & O’Hara, M. (2019). Ophthalmologic disorders and risk factors in children with autism spectrum disorder. Journal of American Association for Pediatric Ophthalmology and Strabismus, 23(6), 337.e1-337.e6. https://doi.org/10.1016/j.jaapos.2019.09.008
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