Future Reflections Fall 2014 EARLY CHILDHOOD
by Mary McDonach
Reprinted with permission from <www.wonderbaby.org>
From the Editor: According to some studies, as many as seven out of ten congenitally blind children are autistic or have autistic tendencies. But do these blind children really belong on the autism spectrum? Parents and professionals have long searched for answers and sought more effective ways to help these children reach their full potential. In this article Mary McDonach, a native of Scotland, describes the insights she gained about her daughter's seemingly autistic behaviors and her relationship with the world around her.
I can only ever write about my experience with my child, and I always write from that perspective first. In this article I would like to address the relationship between blindness and autism, but I do not wish to step on any toes or take issue with what another parent has experienced or lives with daily. I am not writing as a medical professional (though I am one, now retired); I am writing as a mother. Having said that, I would like to share my story.
My daughter, Elizabeth, was born with OCA1A type albinism. That's the one with the beautiful white hair and the visual acuity that can range from almost normal vision to legal blindness.
When Elizabeth was born, she behaved as a blind child because that is what she was. It is said by people with albinism that their eyesight is never worse than the day they were born, and she was no exception. There was strong hope from medical staff that her visual acuity would improve, perhaps even dramatically, but still we had a blind child.
Elizabeth did all the things that a child without sight may do.
We let her call the shots for a while and live a life with no stuffed animals and no sitting up. Then we said, "Enough!" Every child needs challenges, and we found them for her by the spadeful.
Elizabeth's eyesight became very slightly better, not through anything we had done. It was just time and nature. But still she was delayed. She didn't crawl, for example, and why would she? She couldn't find anything except by chance, so why crawl?
Then she realized that people were sitting up from the floor, and in order to get to them she had to stand--so she did. And that was all she did. The bare minimum: Stand! (That's my girl!)
When she was about two years old--just about the time Mummy was about to go bald with worry--Elizabeth walked!!! Yep, just like that she got up and walked five steps across the floor--no big deal, apparently.
And then she started rocking--on every surface, in every room.
And climbing--my fears for her safety still elicit a sort of cute contempt from her. At her nursery she was a "known risk taker!"
And she still wasn't talking, or laughing, but she smiled occasionally--and it was like the sun coming out!
She went to nursery at thirty months, and she was still almost mute. We were offered an MRI by a pediatric neurologist, because by this stage, even her ophthalmologist suspected what he called "an additional diagnosis." We turned down the procedure because of the dangers inherent in general anesthesia. If there was an additional neurological impairment, we'd find out soon enough, we reasoned. But the waiting was not easy.
By this point in the story I'm sure you know what we were worried about. How do you tell the difference between the eye-pressing attendant to a blind child stimulating the optic nerve and eye-pressing of a more self-injurious nature, which can be a symptom of autism?
Elizabeth began talking when she was about two years and nine months old. It was very sudden, and it was in sentences! She was always a child with very well-defined wants and needs, but she developed into a child who could only do certain things in one particular way. For instance, when I read a book to her, I had to say the exact words I had used the first time I had read her the book. She could brook no deviation in the storyline, and her little hand had to follow the story (they were all "touchy-feely" books) in the specific order that she had prescribed.
She had a set of conditions for almost every daily event. And her routine was relentless. She remained a placid, easy-natured child, but became acutely distressed if her routine was messed with.
This routine was not to be confused with her perceived "order" of things, though. Books went in straight, very straight, lines. All over our sitting room, the floor was often covered in her perfectly horizontal books. Long before she had expressive language, she had a developmentally advanced and intuitive understanding of numbers, shapes, and angles.
She also behaved as though particular people were not there. To be fair, she still does this. She doesn't actively dislike anyone, but she only makes an effort to "see" people she is interested in. It probably goes without saying that her taste in people can be described as, at the very least, eclectic.
And then the echolalia almost brought us to our knees--I am not over dramatizing this. If you've survived it yourself, you'll know that. [See Mary McDonach's article, "You Can Say That Again: or, Echolalia, Echolalia, Echolalia," Future Reflections, Volume 30, Number 1, Winter 2011.]
Do you see where I'm going with this?
All of these natural behaviors that can be explained as responses to blindness can equally be laid at the door of autistic spectrum disorder (ASD). And I had seen all of these symptoms before--in the patients I had worked with at various hospitals, the patients with autistic spectrum disorder.
Our GP should receive an award for her patience, thoughtfulness, and genuine interest in the development of our daughter, and for her utter kindness toward us. Time and again we went to her with another piece of the puzzling behavior we were witnessing, and time and again we left her surgery with our minds, at least temporarily, at rest.
Every single time, she asked us if our daughter was distressed by physical contact with us. Each time we replied that she was easily startled, which could cause a degree of distress, but seemed to love physical contact--with just about anyone!
If we had misinterpreted the vulnerability our daughter felt when she was touched--suddenly, from her point of view--then we could easily have rationalized that human contact was unpleasant for her. Instead of becoming practiced at saying things such as, "It's Mummy, and I'd love a cuddle," so that she could anticipate the event, we might have pulled back from touching her because it seemed to upset her. Our withdrawal, in turn, would have meant that she became less practiced at responding appropriately to human contact.
We watched Elizabeth in her almost constant rocking--and one day realized that she was checking every inch of every floor for squeaks!!! She knows our home in a completely different way from the way we do.
We consistently have been blessed by the quality of professionals surrounding our daughter and helping us help her. It was the headmistress of the nursery at which our daughter had a Special Needs Placement who made this most comforting, almost magically reassuring of statements: "This child has an idiopathic learning process, and we must alter the way we assess goal attainment in order to accommodate it." In other words, Elizabeth is responding to the world as a blind child and an individual, and we must take that into consideration when assessing her.
That was the thread that we wove around our fears, eventually stifling them. And in retrospect, it seems so obvious--how could we not have realized that, because her experience of the world was so different from ours due to her lack of vision, her learning would take a different path to get her to the same place?
Some children, just by virtue of chance, are blind or severely visually impaired and also have ASD. I am not saying this lightly, but to emphasize the unlikely matches that nature produces. For instance, some children are born with Down syndrome and albinism. It is very unlikely, but it happens. Unlikely things happen every day.
My experience with my daughter could have had an altogether different outcome. It is possible that, if I had not had high quality professionals around me, I could have believed what seemed to be the evidence of my own eyes. I could have begun strategies that, in the long term, would have been profoundly detrimental to my daughter.
Elizabeth is now in her first year at a mainstream school. She requires special consideration and equipment to diminish the effects of her severe visual impairment. I also am convinced that she truly needs the attitudes of the people working in that particular school. The teachers and other staff members have embraced an attitude of self-education and open-mindedness with regard to giving our little girl the very best educational start. They have this attitude because of their experience, learning, and personalities. Elizabeth is thriving.
But I could have made an irretrievable mistake with the very best of intentions. My experience and the research I've done suggest to me that it is absolutely incumbent on us, as parents, to consider our children's perceptions before we label their box and shut the lid.
Brandsborg, Knut. "Blindness and Autism: What Is the Relationship Between Blindness and Autism-Like Difficulties in Children?" Available at <http://icevi.org/publications/ICEVI-WC2002/papers/03-topic/03-brandsborg.htm>
In this article, the author, a psychologist, tries to explain why there may be a relationship between mannerisms seen in many blind children and autistic behavior: "The sum of all the consequences of being born blind, combined with the way sighted people interact with them, may give a sufficient explanation for the development of additional problems that are usually called autistic."
Ingsholt, Anette. "Blindness, Mental Retardation, and/or Autism."
Available at <http://icevi.org/publications/ICEVI-WC2002/papers/07-topic/07-ingsholt2.htm>
This article tries to elucidate the difference and overlap between these three diagnoses.