One woman
and her grandson use the alphabet to explain personal perspectives on this mild
form of autism.
By Josephine Mele, Parent Magazine, https://www.parents.com/health/autism/symptoms/understanding-aspergers-syndrome/
Asperger's (ASP) is a type of mild autism; kids with
Asperger's might have unusual behaviors, even though they don't have language
or intellect problems. To help parents better understand the symptoms and
behaviors of Asperger's syndrome, I wrote this alphabet with help from my
10-year-old grandson, Nick, who was diagnosed with Asperger's when he was 6. He
is clever, warm, honest, helpful, bright, and thinks outside of the box. Nick
refers to Asperger's as his "problem" and often wishes he didn't have
it. Nick would love it if everyone had information about Asperger's. "If
they just gave me a chance, they would see that I am really very interesting
and I know a lot of interesting stuff."
According to findings from Centers for Disease Control,
published in 2012, Asperger's and other autism spectrum disorders (ASD) affect
an average of 1 in 88 children in the U.S. Most scientists agree that genes are
one of the risk factors that can make a person more likely to develop an ASD
and that poor parenting does not cause ASD behavior. Many historical figures
have shown symptoms of Asperger's, including Wolfgang Amadeus Mozart, Albert
Einstein, Marie Curie, and Thomas Jefferson.
Kids with ASP are often socially and physically awkward;
they may have attention problems, difficulty making friends, and an
all-absorbing interest in specific topics. A child with one or two of these
symptoms, though, may not have Asperger's. To be diagnosed, a child must have a
combination of symptoms and significant trouble with social situations that
affect family, friends, self-esteem, or schoolwork. Ask your child's pediatrician
and school psychologist for help in testing your child. Many kids with ASP need
medication to help with concentration, aggression, or depression some time in
their life. But over time, with the right help, kids often improve and can
begin to learn how to read social cues.
Here, we offer different points of view about Asperger's --
mine from an academic perspective, Nick's from a personal one. Our hope is that
this alphabet will help other families be more aware and educated about
Asperger's so they can help children learn to interact more successfully
despite any differences.
A Is for Aloof
Kids who have Asperger's are often onlookers, not
participants. They seem aloof but, in reality, their lack of social skills is
holding them back. Because "play" is an abstract word, autistic
children are better at games with step-by-step rules that involve taking turns
rather than free-for-all games without structure.
Nick: Sometimes
kids think I don't want to play, but I do. I just don't know how to ask to be
included, so I'm waiting for an invitation. Other times I'm not sure what other
kids are doing, so I'm watching to see what the rules are.
B Is for Behavior
Most people think those on the autism spectrum have a behavior
problem, but this isn't true; they have a medical problem. When their brains
get overstimulated or they get frustrated, they often act out, sometimes with
aggression.
Nick: My
brain gives me too many messages at once. It's like having 10 people telling me
to do different things at the same time. When I get confused, I might knock
things off the table, shout "Stop talking," or walk away. I need a
few minutes to get my thoughts organized. My teacher lets me take a
"chill" break in the hall for a minute when I need one.
C Is for Conversation
Conversation may feel awkward and lack the usual
give-and-take because "small talk" is something a child with
Asperger's doesn't understand. For that child, the reason for talking is to
share information by asking or answering questions. An adult may ask, "How
was Disneyland?" and get a one-word answer, such as "Fine," or
ask, "What did you like the best?" and get an answer of
"Everything." You can keep prompting but get no more responses.
Nick: It's
hard to start or continue a conversation because I'm not sure what I should say
when I don't have a question. I often just answer "yes" or
"no" to a question. But ask me about trains, planes, computers,
electricity, or tornadoes and I will talk until you walk away. Please try
to start a conversation with me anyway.
D Is for Different
Around age 7, a child with Asperger's usually becomes aware
that he is "different" from the other kids in the class. He might
struggle with filtering out the teacher's voice from all the other things vying
for his attention. Visual learning tools that work for other kids (such as
colorful, attention-grabbing bulletin boards or interactive blackboards) can be
the very things that causes confusion and distress because of sensory overload.
Nick: My
teacher treats me differently than the other kids now that she knows about my
problem. She knows that my being in the middle of the row is confusing and
makes me nervous, so she lets me sit at the end of the row. She knows I feel
crushed standing in line if someone is in front and behind me, so she lets me
be first or last.
E Is for Eye Contact
For children with Asperger's, eye contact is usually
avoided, even when they are infants. Kids with ASP might look past you, up, or
down, but not right at you. This makes it impossible for them to read faces and
know when a person has lost interest or is unhappy with their behavior, or is
trying to give them certain cues.
Nick: Just
because I'm not looking at your face doesn't mean I'm not paying attention or
listening. Looking in someone's eyes seems really weird and uncomfortable to
me. Sometimes when I look in a person's eyes I have trouble concentrating on
what she is saying.
F Is for Favorite Subjects
Kids with Asperger's have specific favorite subjects that
can include robots, the weather, the news, reading, playing with water, and the
Discovery Channel. They usually want to (and try to) talk about every detail of
each subject, whether you're interested or not. Interests include building
things out of Legos, paper, sand, and wood or just about anything they can
find.
Nick: I
like building things. It took me six weeks to build a paper city because I kept
getting new ideas. I only stopped when my cat ran through the city and
demolished it. I like to watch programs on science and machines; they give me
ideas for my own inventions. I am good at math, spelling, and science, but not
so good at penmanship, art, or PE.
G Is for Groups
Groups are a problem because kids with Asperger's have an
unusually strong sense of hearing, and being in a large group can be unsettling
because of the noise level. They will usually act immature, make rude noises,
act out, or ask to leave. These reactions can make family gatherings, movies,
recess, and school assemblies problematic. When you sense tension building, ask
the child if he needs a break and help him find a quiet place.
Nick: The
noise in a group, like the lunchroom, playground, and the classroom, can get
too loud for my brain. I might cover my ears and put my head down to make it
quieter so I can think. One time I left an assembly where African drums were
being played because they were so loud they made my whole body shake.
H Is for Hyperactive
Hyperactivity is a common symptom for kids with Asperger's.
They might run around the playground by themselves for no apparent reason; go
without sleeping through the night; talk incessantly on a subject that
interests them; shout repetitive words; tap hands, feet, pencils, etc.,
constantly; and blurt out words or sounds at inappropriate times.
Nick: Sometimes
I make noises like a cat or dog; spin my pencil, or kick the furniture while
I'm thinking. I have no idea I'm doing this until someone tells me to stop.
Sometimes I blurt things out; my brain just needed to say things right then and
it didn't ask for my permission.
I Is for Impulsive
Impulsive behavior can be embarrassing for parents in social
settings. Kids have an inability to see things from another person's
perspective. By age 9, other children can usually control their impulse to
blurt out, interrupt, make rude noises, or hide under tables. As children with
Asperger's grow up, these social faux pas will become a bigger problem. Parents
should role-play with them about socially acceptable behaviors. Inform everyone
-- relatives, friends, neighbors, and teachers -- of your child's condition and
what his behavior might look like so they can be prepared and supportive.
Nick: When
I was in third grade, I asked my grandma, who is a teacher, to visit my school
and talk to my classmates about Asperger's. After the talk, kids treated me
nicer and were more understanding because they found out I was not just being a
brat or a baby.
J Is for Jokes
Some kids with Asperger's have brains wired for facts and
they absorb information literally; they often have difficulty with
understanding humor or playing pretend. They love information, especially on
topics they like, but they can't tell when you're being serious and when you're
being humorous.
Nick: I
don't get jokes or understand when you're kidding. I have difficulty noticing
the expressions on your face or the different tones of your voice. I usually
respond by saying, "Really"? I become confused because I think you
mean every word you say. Please tell me when you're just being silly.
K Is for Kindergarten
Kindergarten is especially difficult for a child with ASP.
Everything is new and unfamiliar -- teachers, classmates, noise, rules, daily
routines -- and there is no quiet place to go. This all adds up to a lot of
confusion. To ease a child's transition, make an appointment to meet with the
teacher and to see the room before the first day. Bring along information on
Asperger's and ask if there's a daily routine. Better yet, plan a playdate with
one or two classmates before school starts so the child will know someone in
the room.
Nick: I
couldn't wait to go to kindergarten. When I got there, I was surrounded by lots
of kids I didn't know and by lots of noise. I felt like I couldn't breathe. My
teacher thought I had a behavior problem and yelled at me every day until my
grandma and my mom talked to the school principal. The principal must have
talked to my teacher because she was nicer to me after that, and I started to
like school again.
L Is for Listening
Listening (as in hearing, not minding) is something that
kids with Asperger's are skilled at even when it seems as if they aren't paying
attention. They can repeat every word they hear on the topics that interest
them, but if you're talking about something that doesn't interest them, they
may not be listening.
Nick: If
I like something, I'll try to tell you every detail I know, even if you're
talking about something different. Just say, "It's my turn to talk
now," and I'll try to listen to what you are saying until I think of
something I think you should know.
M Is for Motor Skills
Difficulty with muscle control is common in children on the
autism spectrum. Their gait might look a little different; they might misjudge
the location of a moving ball; and they may have difficulty with motor skills
such as climbing, skipping, balance, and running, because they are not sure
where their body is in space.
Nick: Mom
said she worried that I had a problem when I was 2 years old and couldn't walk
or talk as well as my cousin who was the same age. She took me to a special
preschool gym that helped me with balance, running, and climbing. I have an
after-school aide who helps me throw and dribble a basketball, stretch my
muscles, and improve my balance.
N Is for Naive
Kids diagnosed on the autism spectrum are often the target
of practical jokers and bullies. They are honest and have good intentions, and
they believe that others are the same. A fast talker can confuse a visual
learner who doesn't hear or process every word spoken and doesn't always
understand the nuances. Often, kids with ASP refer to school bullies as friends
because the bullies pay attention to them. Also, they may take things at face
value and believe things without question or skepticism.
Nick: I saw
a program on TV about the apocalypse. When I told my grandma, she said that
people have been predicting the end of the world since she was a little girl. I
said, "But this time it is true. I saw it on the Discovery Channel, so it
has to be true." She told me it was the Mayan calendar and because we
weren't Mayan I could stop worrying, so I did.
O Is for Order
Order is important and everything must be in the same place
all the time. It's unclear if this is because it helps kids with Asperger's
maintain a sense of control or because it makes things easier to find. If
things aren't where they belong, a meltdown is sure to happen.
Nick: I
like my shirts and pants hung by similar colors so I can find the ones I want
to wear. My desk is neat so I can find things quickly. I sort my toys into bins
by color and size. I don't even like different foods touching each other on my
plate. It seems wrong to me to have things crowding each other. I like
everything in its own space.
P Is for Patience
Kids on the autism spectrum have no patience when they want
something, but they seem to have more patience with babies, animals, people
with special needs, and older adults than other kids do. They are more
communicative with these groups than they are with their peers. They don't see
them as different and they give help freely. They are open-hearted,
well-intentioned, and kind with those they trust.
Nick: My
grandpa needs help getting things so I do it for him. He messes up the remote a
lot and asks me to help him find Netflix. I don't mind because I'm good at
that. When Grandma gives me a cookie, I always ask for one for Grandpa too. We
talk a lot about buildings; he was a contractor and knows a lot of interesting
stuff about design and construction.
Q Is for Questions
Many kids don't have a social filter and ask questions at
the most inappropriate times but kids with Asperger's don't respond to a hint
or even a direct comment to stop. They just keep going until they resolve the
issue for themselves. When I took my 6-year-old grandson to the store, he asked
the clerk if she had a baby in her stomach. She answered, "No." I
glared and shook my head no. He pressed on, "Then why is your stomach so
fat?" I told him that he wasn't being polite. As we were leaving, he said,
again, in a very loud voice, "But her stomach is kind of fat!"
Nick: I
ask a lot of questions because I want to know things. My brain is curious about
a lot of stuff. I don't understand what it means to be polite or rude. If you
have a question, shouldn't you ask it? How will you learn stuff? My mom came up
with the word "zip" when she thinks I should stop talking. It doesn't
always work.
R Is for Routine
Setting times for meals, getting dressed, leaving the house,
doing homework, and going to bed are vital elements of a daily schedule.
Routines are absolutely necessary and serious meltdowns can be triggered by
major or minor changes in the schedule and by changing rules (even if they're
to the child's advantage). Set a plan and have everyone in the family stick to
it.
Nick: I'm
happiest when I know what's going to happen next. On Sunday I get to write on a
white board what's going to happen for the week. I don't like surprises or
being told something will happen in 10 minutes. I like to know the rules and
follow them. My teacher has a lot of rules in our classroom and I like it that
way. Sometimes kids make fun of me or call me names when I tell them they are
breaking a school rule.
S Is for Sitting
Unless a child with Asperger's is totally involved in what
is going on, sitting still is difficult. Muscles may cramp or twitch, which
makes sitting still a physical problem. If a child doesn't find what you're
saying interesting, she might walk away.
Nick: Sitting
for a long time is hard for me, and my body needs to move around. When I was in
kindergarten, my legs hurt if we sat on the floor for sharing circle. My
teacher got me a special wiggle pillow (it's filled with air that lets me shift
my weight without standing up) that made it easier for me to sit longer. Now
that I'm older I don't need it anymore. I went to see a play and the special
effects were so interesting I could sit through the whole show without having
to get up.
T Is for Tantrum
You haven't really seen a tantrum until you've seen one
thrown by a child with Asperger's. This is not a
hold-your-breath-until-you-get-what-you-want-tantrum, but an
out-of-control-ranting-possessed-arms- flailing tantrum. You may never know the
reason for the tantrum and sometimes the child doesn't either. Keeping a
journal of what happened before the tantrum might help you find the trigger.
Nick: When
I'm very tired, I can get out of control because my brain can't do or hear one
more thing. I have thrown and broken things I like, tipped over a table, ripped
up homework, yelled at people, and started crying. I usually wear myself out,
and fall asleep, but I'm fine when I wake up.
U Is for Understanding
Kids on the spectrum need more understanding than most
because they learn differently and don't understand some things. The typical
brain progresses in a general to specific direction, but the autistic brain is
just the opposite. Our brains take in information and cross-reference it, but
kids with ASP have to be taught to cross-reference, think in categories, apply
concepts, and identify cause and effect. Parents should get involved with a
support group, read books on the subject, and talk to specialists at school. Share
information with family and friends so they can better understand the child and
offer the needed support. Remind them that Asperger's is a medical problem, not
a behavioral problem; the brains of kids with Asperger's are wired differently.
Nick: My
brain is like an untrained dog. You have to keep telling it the same thing over
and over until it gets it. If you want to understand me, read a book or look
online for information. You can also read my favorite book, All Cats
Have Asperger's Syndrome. I hope you'll be more understanding and help me
by being my friend and by not letting others make fun of me.
V Is for Voice
When a child with Asperger's reads aloud, his voice can
sound flat and boring, without much intonation or emotion. His voice may be
singsong, robot-like, or high-pitched. Each word is a stand-alone bit of
information, not part of a story.
Nick: My
voice gets very quiet, loud, or squeaky when I'm nervous. Sometimes it sounds
like I inhaled helium from a balloon. When I'm talking in front of the class, I
can sound like I am singing. I can't control it at first, but after a few
words, when I feel safe, I can sometimes be in charge of my voice.
W Is for Weight
A weighted vest, heavy blanket, sleeping bag, or strong bear
hug can calm down an overactive brain. Full-length body contact is soothing and
calming. The movie Temple Grandin is about a woman with autism
who achieves a Ph.D. in animal science and becomes a professor and an inventor.
While in college, Grandin invented a squeezing machine to calm herself down
when she was stressed out.
Nick: Sometimes
I need to pile pillows and blankets on top of myself to stay calm. A friend has
a vest with weights in it that he uses when he feels out of control. Sometimes
squeezing my mom real tight helps me to feel comfortable and safe.
X Is for X-ray
Doctors are conducting research on patients, using X-rays
and scans of the brain in action, to figure out the causes of Asperger's. They
have already noticed more activity in many different parts of the brain of an
ASP patient who is performing the same tasks as a non-ASP patient. Scientists
seem to agree that autism spectrum disorders are genetic problems and are
trying to isolate the affected genes.
Nick: If
you had X-ray vision you would see that my brain works differently than yours.
Many parts are working at the same time and sending me lots of messages while
yours are sending only a few messages to one part of the brain. I saw this
demonstrated on the Discovery Channel.
Y Is for Young
Diagnosing a child with Asperger's can be difficult because
there is no medical test, like a blood test. All children should be screened
for developmental delays during regular well-baby visits, specifically at 18
and 24 months. Youngsters with a sibling or another family member with
Asperger's are usually at a higher risk, and boys are at a higher risk than
girls. The younger a child is diagnosed, the sooner he can get the necessary
help to be successful.
Nick: Mom
said she had never heard of Asperger's until the doctor told her I might have
it when I was very young. She knew something was wrong but didn't know the
problem. She read a lot about Asperger's, and then some of the things I didn't
do as a baby -- like look her in the eye, follow her finger when she wiggled
it, try to hold myself up -- made more sense to her.
Z Is for Zone
When a child with Asperger's is deeply involved in a project
or on the computer, it is difficult to get her out of the zone to focus on you.
Often, when a child is in the zone, she can say things out loud when no one
else is around. Setting a time limit, taking required meal and bathroom breaks,
and giving a 10-minute warning can help avoid problems.
Nick: I
usually set a timer so I know when to stop building Legos or playing computer
games. I get so involved in what I'm doing that I don't realize how long I've
been doing it. Once I played Legos for six hours and told mom I wasn't done
when she said it was time to stop. When mom showed me the clock, I was
surprised. Sometimes I concentrate so hard on what I'm doing that I don't even
know someone is talking to me. You might have to tap my shoulder. I'm not
ignoring you -- I don't even hear you.
Josephine (Jo) Mele is the Emeritus College Executive
Director of Diablo Valley College. She is the mother of two children and
grandmother of four. She has researched Asperger's Syndrome extensively since
her grandson's diagnosis.
Copyright © 2012 Meredith Corporation. Reviewed and updated 2013.
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ABCs of Asperger's Syndrome