Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Stephanie Kieszak-Holloway
From the Editor: What, if any, is the relationship between blindness and developmental delays in young children? Why are so many blind children diagnosed with autism or said to have "autistic-like" symptoms? Stephanie Kieszak-Holloway, president of the Georgia Parents of Blind Children and a frequent contributor to Future Reflections, ponders these questions and more in the article that follows.
"Correlation does not imply causality." When I was an undergraduate student in statistics, that phrase was drummed into my head. Simply put, it means that two things can be related without one causing the other. For example, having blonde hair is correlated with having blue eyes, but one would not say that there is a cause and effect relationship between the two. It is possible that instead of one event causing another, they are both caused by a third event. Blonde hair and blue eyes are linked because the genes responsible for hair and eye color occur close together on the same chromosome.
I remembered the distinction between correlation and causality all through my undergraduate years and during my graduate training, which included a master's degree in biostatistics. I continued to remind myself and my coworkers of this basic truth during my thirteen years as a biostatistician at the Centers for Disease Control and Prevention (CDC). However, when my daughter, Kendra, was born seven years ago, the phrase took on a much more personal meaning.
Kendra was born blind. The merry-go-round of therapies, appointments, and doctor visits began shortly after we brought her home from the hospital. I had no idea that a tiny baby could require so many therapists! I was told that she needed a physical therapist (PT), an occupational therapist (OT), and a speech therapist (ST). I was told that blind babies automatically are delayed in reaching their developmental milestones. The professionals told me not to expect Kendra to walk until she was two or three years old.
At first I found comfort in those predictions. If my daughter didn't reach a developmental milestone at the same age as most children, there was a ready explanation--it was all because she was blind. However, my sense of comfort faded quickly, to be replaced with feelings of anger and disbelief. There was no way someone was going to tell me that my daughter would be delayed simply because she was blind! I understood that correlation does not imply causality. I believed that being blind could be related to the occurrence of developmental delays, but I did not believe that those delays were caused by blindness itself. Perhaps developmental delays were tied to low expectations or lack of opportunities. The challenge was to counteract the possible negative effects of Kendra's blindness and help her progress at a healthy pace.
One of my first steps was to find therapists who shared my high expectations for my daughter. I learned a lesson that I try to pass on to other parents whenever I get the chance. If a professional believes your child cannot achieve something, he or she is the wrong person for the job. Trust your instincts and remember that you are your child's first teacher.
When my son, R.J., was born three and a half years after Kendra, I truly realized how much a baby learns visually, by observing others. For instance, I never had to teach my son to eat with utensils. He learned by watching other people and imitating what he saw them do. Kendra, on the other hand, needed to be taught how to use a spoon and fork.
We used hand-under-hand techniques to guide Kendra through the scooping motions associated with utensil use. We gave her opportunities to practice scooping sand, rice, and beans into buckets with a shovel. Another trick that worked well was to put small, medium, and large bowls of oatmeal in front of her and have her pretend she was Goldilocks. Today she is a reluctant, yet proficient, utensil user.
Kendra learned to use a spoon in nonvisual ways. Does that mean that being blind somehow made her unable to eat with silverware? I think most people would agree with me that it did not. Does it make any more sense to say that simply being blind prevents a child from walking until the age of three? I don't believe it does. A blind child simply may need alternative methods to learn a skill or to reach a milestone.
If one believes that being blind does not in itself cause delays in walking, then what other factors may be responsible? It is possible that a blind child might lack the motivation to move out into space because he/she can't see that there are interesting things to explore. Perhaps the child fears the unknown and does not wish to move away from a place he/she considers safe and familiar. I do not know whether any of my explanations is the right one. The point to remember is that there may very well be alternative reasons for a blind child's delays.
Kendra walked at fifteen months of age. I don't know if it helped or not, but we bought Pip Squeaker shoes for her when she was an infant. These shoes squeak when the child bears weight on her/his feet. The sound helped motivate Kendra to place her feet on the ground. When she was eighteen months old she got her first NFB cane. The cane extended the boundaries of her world and gave her feedback about the things around her.
Blindness in children is considered a low-incidence disability. According to estimates from the 2007 Annual Report of the American Printing House for the Blind, there are 57,696 legally blind children (ages 0-21) in the United States. Numerous studies have reported that over half of all blind children have additional disabilities. After putting Kendra through extensive genetic testing when she was a baby, the doctors still don't know why she has her combination of eye conditions. At first they thought she only had unilateral microphthalmia and cataracts. Later the list grew to include bilateral microphthalmia, aniridia, retinal detachment, and PHPV (peristent hyperplastic primary vitreous.) For several years I felt as though I was constantly waiting for the other shoe to drop. After all, doctors never determined why Kendra was blind; I was left wondering what other conditions might reveal themselves as she got older.
I've lost track of the number of disorders I worried about in Kendra's early years. My fear that another disability would suddenly manifest itself often led me to jump to conclusions based on things I read or observed. Was her head too small? Perhaps she had microcephaly. Did she have the type of aniridia that is linked with Wilms' tumor? Perhaps she had WAGR syndrome. Did she have more tantrums than a typical two-year-old? Maybe she had autism. This last fear concerned me most of all.
In a paper presented in August 2002, Norwegian psychologist Knut Brandsborg commented that most young blind children meet at least two or three of the twelve criteria for autism--just by being blind. For example, one criterion for placement on the autism spectrum is failure to make eye contact with others. He goes on to say, "The sum of all the consequences of being born blind, combined with the way sighted people interact with [blind children], may give a sufficient explanation for the development of additional problems that are usually called 'autistic'".
I found Brandsborg's discussion of joint attention to be very interesting and thought-provoking. Joint attention is the process of sharing one's experience of observing an object or event. The definition includes references to following another person's gaze or pointing gesture. An inability to display joint attention is one of the hallmarks of autism in sighted people.
A sighted child generally receives feedback through both sight and hearing. For example, while exploring a new toy with a parent, the sighted child most likely shares looking at the doll and hearing the discussion about it. This sharing leads to the development of joint attention. A blind child does not receive visual feedback from the parent. Is it possible that tactually exploring the new toy together with the child would adequately replace the shared gazes?
In our family, we have always explored things tactually with Kendra. In fact, when she feels something interesting, she guides our hands to touch it as she talks about it with us. I don't think it was ever a conscious decision on our part to join Kendra in touching things; it just seemed the natural way to share an experience with someone who can't see. Did our tactual joint attention contribute to Kendra's willingness, from a very early age, to bring things to others for shared exploration? If so, it's a strategy worth emphasizing to other parents.
I was completely devastated when I heard that one of Kendra's preschool teachers thought she was autistic. I suspect the teacher's belief was based on Kendra's reactions to certain sounds and her difficulty dealing with changes in her routine. At the time I wondered whether that teacher would have held the same opinion if everything else had been equal, but Kendra had been sighted. Does a child's blindness make us more likely to search for other diagnoses? Do we attribute behaviors in a blind child to the blindness, when those same behaviors in a sighted child would be scrutinized less closely or dismissed altogether? I believe that "yes" is often the answer to both of these questions.
A blind child needs alternative methods for learning to eat with utensils. Are there alternative methods for interacting with a blind child that would decrease the autistic-like behaviors noted so often? I have provided few answers in this piece, but I hope I have raised some important questions. With careful thought and research, perhaps we can sweep aside the notion that, in the case of blind children, correlation implies causality.
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