As a
parent of a child with autism, you will have to take on a role as the
interpreter between the world and your child.
You’ll learn a new way of thinking about the world, where rumbling
motors become a threat or sliding elevator doors become the most fascinating
feature of a building. You’ll have to
learn to visit the autism world and see things through your child’s eyes and
mind. It’s difficult but possible, if
you can be open-minded.
First,
here are a few things you should know about people with autism. Statistically, they’re better at seeing
patterns in large amounts of information.
They can pick up an incredible amount of detail (which may be how
autistic savants are able to perform their amazing feats). They tend to be better with spatial and
visual memory, making it easier to remember things they’ve seen than things
they’ve heard. Someone with autism can
be focused on details the rest of us ignore.
Children with autism often perform repetitive play: opening and closing
cupboard doors, spinning wheels on toy cars, stacking blocks or lining up toys
in long, precise lines. Temple Grandin,
a woman with high functioning autism, tells us that she thinks entirely in
pictures rather than in words. If you
ask her a question, she finds the answer by mentally sorting through visual
images.
It’s statistically
common for someone with autism to have unusually strong or weak senses. Their sense of touch might be so sensitive
that the slightest touch feels like being hit or it might be so weak that they
have to bump or press strongly against an object to have any sense of it being
there. They might be driven crazy by the
buzzing of a fluorescent light or not hear someone talking to them less than
two feet away. The sensory overload can
be overwhelming, leading to inexplicable tantrums which can mystify a
parent. A weakened sense can be
frustrating. Your child may literally
not hear an instruction rather than refusing to obey it.
My eldest
son has strong oral sensitivities, meaning the ordinary act of chewing his food
is intolerable to him. We were having
difficulty transferring him from baby food puree to solid food and were told to
withhold the puree. When he got hungry,
he would eat. Normally, this would be
good advice. But it didn’t take the
sensitivity into account. No matter how
hungry he got, the act of chewing was too upsetting and difficult. He wouldn’t eat solid food any more than a
starving man would swallow molten metal.
If your child is having consistent difficulty with a task, sensory
overload might be the reason. Until the overload is dealt with, they won’t have
success with the task.
On the
other hand, he also has auditory processing problems. His hearing is fine but his brain simply
doesn’t pay attention to what his ears are telling him. We’ve had to teach his brain to pay attention
to what he’s hearing. It’s still
difficult to get him to pay attention when he’s excited or highly focused. It was a long, drawn out procedure of
consistently rewarding him for listening.
Another
challenge you’re likely to face as a parent is your child’s inability to focus
on what we would consider important. My
husband has Asperger’s and he remembers feeling completely overwhelmed by
distractions at times. He described it
as being like trying to conduct an ordinary conversation with each of you
standing at opposite ends of a busy arcade.
The constant barrage of noise and flashing lights keeps interfering with
any attempt to concentrate. If this is
the case, it can help to keep your instructions simple with only one or two
steps at a time.
You
could be facing the opposite problem as well.
Although there are times my husband gets hopelessly distracted by
background information, there are also times he can completely shut it
out. He was working on a difficult
problem for his job when he felt a tap on his shoulder. There had been a fire and the alarm was going
off. But my husband didn’t hear it until
the fireman tapped him on the shoulder and broke his concentration.
This
isn’t exclusive to people with autism.
We all have the ability to focus our concentration to the exclusion of
everything else. It’s been shown in
multiple experiments. If you give people
a task, like watching a particular dancer or counting passes, then they’ll miss
something which would otherwise be completely obvious, like a costumed
individual passing or waving. But it
appears to be harder for people with autism to control their focus.
Many
people with autism seek an extraordinary level of control over their lives and
can become extremely agitated at any disruption in their preferred
routine. For some, a seemingly trivial
change such as rearranging books on a shelf can trigger a catastrophic
reaction. There are theories that the
overwhelming distractions of the everyday world are why people with autism get
locked into their rigidities. It is
easier for them to deal with an artificially predictable routine than the unpredictability
of ordinary life. As a parent, this can
mean you limit yourself to only working on one or two changes at a time, to
avoid overwhelming your child.
A
common soothing technique is self-stimulation, or stimming. People with autism will indulge in repetitive
behaviours which may seem strange, such as flapping their hands, spinning in a
circle, moving items in front of their eyes, stacking toys. There are an infinite variety of stimming
behaviours and some will stim for hours at a time if allowed. More articulate members of the autism
community tell us that these behaviours feel good, although they can’t explain
why. Sometimes stimming behaviour can be
potentially dangerous, such as banging their head or arm, picking at skin or
pulling hair. When something damaging
feels good to your child, it can be very difficult to change it. Ask for professional help.
There
are lots of things you can do to help your child. If your child often ignores instructions,
then make sure you have his or her attention before speaking. You can also reinforce your words with visual
reminders. We have a large calendar for
each of our boys which outlines their morning, afternoon and evening activities
for the week. We also use a board with
two large squares marked “First” and “Then” to help them with difficult
activities and for moving between activities.
We’ll put an image of a plate in the “First” section and a picture of
the computer in the other. Then we can
tell our son: First supper, then computer.
We leave the board out as a reminder during his meal and if he gets
restless or begins to complain, we can use it again.
It’s
important to remember that your child isn’t trying to be difficult or
obstinate, no matter how challenging his or her behaviour is. There’s usually something he or she is trying
to let you know. It can take a lot of
careful and patient observation to figure it out. Once you know, you can remove the problem or
work on a more appropriate way for your child to express his or her feelings. But it’s important to try and be patient with
both your child and yourself. You’re
both learning a foreign culture. It’s
going to take time but eventually you’ll find your way around.
I cannot hold my tears when I read the first paragraph. I hope I can share my son's world, and somehow understand him and help him.
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