Mary McDonach
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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 OCA1 a type albinism. That's the one with
the beautiful white hair and the visual acuity that can range from almost normal
vision to legally blind.
When she 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. She did all the
things that a child without sight would do:
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She startled when touched or spoken to closely
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She was a very calm child — all the better for listening to her environment
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She had phobic responses to particular fabrics, like stuffed animals and
leather, I recall vividly
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She had no ambitions to sit up unaided, and why would she if her view got no
better and she'd be more vulnerable?
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.
We bought a toy that changed her center of gravity when she moved, something
very similar to the Bilibo; We insisted that she sat up to become part of the
company; We persisted in ways that make me tired to remember them now!
And her 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 or
follow anyone, 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 — she 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" but we turned
it down because of the dangers inherent in general anesthesia. If there was
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 eye-poking attendant to a blind child
stimulating the optic nerve and eye-poking of a more self-injurious nature,
which is a facet 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 was reading 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 often as, at the very least,
eclectic).
And then the echolalia almost brought us to our knees — I am not over dramatizing
this and if you've survived it yourself, you'll know that.
Do you see where I'm going with this?
All of these natural behaviors that can be explained by blindness can equally be
laid at the door of Autistic Spectrum Disorder.
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 G.P. should receive an award for her patience, thoughtfulness, and genuine
interest in the development of our daughter and her utter kindness with 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 disinclined or 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 like "It's mummy and I'd love a cuddle" so she could
anticipate the event, we might have pulled back from touching her because it
"seemed" to be upsetting her, and this would in turn have meant that she became
less practiced at responding appropriately to human contact.
We watched her 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 to the way we do — naturally!
We have been consistently 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 because of 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 Downs
Syndrome and Albinism. It is very unlikely, but it happens.
Unlikely things happen every day and my experience with my daughter could have
had an altogether different outcome. It is also possible that if I had not had
the quality of professionals around me, I could have believed what seemed to be
the evidence of my own eyes and begun strategies, which would have, in the
longer term, 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 would also insist that she truly needs the attitudes of the people working in
that particular school who have embraced an attitude of self-education and open
mindedness with regard to giving our little girl the very best educational
start. Our thanks to these people are redundant—they have this attitude because
of their own experience, learning, and personalities and Elizabeth is thriving.
But I could have made an irretrievable mistake with the very best of intentions.
Both 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.
Resources:
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Is My Blind Child Autistic?
-One Parent's Experience-
by Mary McDonach
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6.Nov.2016
publicado
por
MJA
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