Our Journey With Visual Processing Difficulties And ASD
In recent years there have been numerous studies documenting visual perceptual impairments in those with Autism Spectrum Disorders. Much research does indicate that, these perceptual alterations are independent of social function (behavioral issues), and very often are either misdiagnosed, underdiagnosed or not detected at all. My husband Dan and I, have a 19 year old daughter (Jillian) a very premature baby, that was diagnosed at the age of 2 with PDD-NOS, a neurological disorder of unknown origin, and eye muscle problems.
For many years we searched for some answers to Jillian’s many disabilities. After having a kidney transplant in 2009 at the age of 17, Jillian was finally diagnosed with Joubert-Nephronophthisis, a rare neurological disorder that affects motor control, vision and the kidneys. Joubert-Nephronophthis is a “spectrum” disorder like Autism, and has many variants making it difficult to get a diagnosis and/or treatment. These disorders in addition to Jillian’s Autism, has made life very challenging for our family.
Over the years, Jillian received every type of intervention possible, to assist with her autism and motor issues. Unfortunately, we were not aware that she needed a great deal of intervention with her visual perceptual disability and visual delays. As a baby and a toddler were knew Jillian would need to have eye surgeries performed, as her prematurity caused some eye issues. One surgery was for strabismus (crossed eyes) and the other was for lazy eye (exotropia). Both surgeries were succesful – or so we thought. After many many years, we just assumed she could “see” normally, as all of her vision testing revealed almost 20/20 visual acuity and she no longer needed to wear glasses.
However, she did do some strange things – like tiltling her head in various directions, hold onto walls while navigating hallways in buildings or having a shower, and would often become hysterical navigating in new environments. She simply didn’t know where her body was in relation to the area of space she was in. We just assumed it was “behavioral”, due to the Autism, and her poor motor issues which made her unsure of her footing. Jillian also has many learning issues and delays, mostly centered around reading, writing, and math. Both we and our educational teams over the years, just assumed it was from the Autism and/or her neurological disorder or mild mental retardation. None of us realized that her eyes could be causing her learning and behavioral issues.
The muscles in Jillian’s eyes looked good cosmetically, but we did not realize over the years, that she was suppressing the vision in her left eye.When she tries to use both eyes to see (convergence or binocular vision) she has double vision. Vision testing at several opthlalmic practices and at school with a Snellen Chart, indicated that Jillian had “normal” 20/20 eyesight. The Snellen Chart measures only the sharpness of vision, it does NOT test for eyetracking, aim, eyeteaming, depth perception, peripheral vision or visual perceptual skills. It cannot measure the ability to see adequately at 20 inches, which affects the capability to read, write, draw or perform math functions.
Those with visual perceptual disfunctions can have their entire world turned upside down, simply because they have great difficulty judging distances and depth perception, which in turn affects balance, large motor coordination and the perception of the environment. It can also cause numerous behavioral issues. Many individuals with ASD’s are very clumsy and very often, cannot participate in sports activities. Visual problems are more common among those with sensory impairments, and because of this, we were referred by Jillian’s Opthlmalogist to a Developmental Optometrist that specializes in Vision Therapy.
When the Optometrist did his evaluation, we were stunned to learn that Jillian had no depth perception, peripheral vision, binocular vision, and had a gaze aversion. Gaze aversions are common among those with Autism Spectrum Disorders. All of these issues can cause a myriad of problems, including but not limited to: eye strain, blurred vision, migraines, eye fatigue, eye pain, inaccurate hand-eye coordination, abnormal posturing, distractability, spatial disorientation, diminished accuracy and difficulty shifting focus from one distance to another. The list of symptoms is quite extensive and too numerous to be able to write about here, but you get the idea.
To date, Jillian has completed 24 sessions of vision therapy, and has done remarkably well. For therapy to be beneficial, it must be ongoing until the patient reaches a plateau. This could take many months or years to achieve and this type of intevention is quite expensive because insurance doesn’t cover it. You can expect to pay between $1,600 to $3,000 upfront initially. It’s a shame that individuals with ASD’s, are not referred to a vision specialist as soon as they are diagnosed. School districts need to become more aware of this issue, so students can receive appropriate interventions at a younger age. We would highly recommend Vision Therapy (regardless of cost) to those that have a loved one with an ASD or know someone that does. For more information, please contact The College of Optometrists In Vision Development in St. Louis, Missouri (314) 991-4007. You can also email me for more information at : firstname.lastname@example.org.
Author: Susan Friedman