Wednesday, February 18, 2009

Autism

I received this via an email and I figured I would post it. It is really good information about autism. While Braden is very high functioning on the scale so much of this still applies to him. He has so many issues that sometimes autism gets pushed to the back but I find he does SO much better when I am implementing autism therapies and ideas to his day. I put my own notes in parenthesis.

Ten Things Every Child with Autism Wishes You Knew

by Ellen Notbohm

Some days it seems the only predictable thing about it is the
unpredictability. The only consistent attribute -- the inconsistency
There is little argument on any level but that autism is baffling, even
to those who spend their lives around it. The child who lives with
autism may look "normal" but his behavior can be perplexing and
downright difficult. (I try to really watch having a judgmental thought about a kid having a fit while he may be doing just that he may not as well I have a good friend who it is a nightmare for her to take her son to the store as he does not do well and she is constantly looked down on. Braden still has an occasional melt down but not to the degree he did in his preschool years.)

Autism was once thought an "incurable" disorder, but that notion is
crumbling in the face knowledge and understanding that is increasing as
you read this. Every day, individuals with autism are showing us that
they can overcome, compensate for and otherwise manage many of autism's
most challenging aspects. Equipping those around our children with
simple understanding of autism's most basic elements has a tremendous
impact on their ability to journey towards productive, independent
adulthood.

Autism is an extremely complex disorder but for this article we can
distill it to what I call The Big Three: sensory processing challenges,
speech/language delays and impairments, and whole child/social
interaction issues. And though these three elements may be common to
many children with ASD, we also must keep front-of-mind that no two (or
ten or twenty) will be alike. For every child: a different spot on the
spectrum. And, just as importantly - for every parent and teacher, a
different spot on the spectrum.

Here are ten things every child with autism wishes you knew:

1. I am first and foremost a child -- a child with autism. I am not
primarily "autistic." My autism is only one aspect of my total
character. It does not define me as a person. Are you a person with
thoughts, feelings and many talents, or are you just fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?

As an adult, you have some control over how you define yourself. If you
want to single out a single characteristic, you can make that known. As
a child, I am still unfolding. Neither you nor I yet know what I may be
capable of. Defining me by one characteristic runs the danger of setting
up an expectation that may be too low. And if I get a sense that you
don't think I "can do it," my natural response will be: Why try?

Sensory integration may be the most difficult aspect of autism to
understand, but it is arguably the most critical.

2. My sensory perceptions are disordered. This means that the ordinary
sights, sounds, smells, tastes and touches of everyday that you may not
even notice can be downright painful for me. The very environment in
which I have to live often seems hostile. I may appear withdrawn or
belligerent to you but I am really just trying to defend myself. Here
is why a "simple" trip to the grocery store may be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once.
The loud speaker booms today's special. Musak whines from the sound
system. Cash registers beep and cough, a coffee grinder is chugging.
The meat cutter screeches, babies wail, carts creak, the fluorescent
lighting hums. My brain can't filter all the input and I'm in overload!


My sense of smell may be highly sensitive. The fish at the meat counter
isn't quite fresh, the guy standing next to us hasn't showered today,
the deli is handing out sausage samples, the baby in line ahead of us
has a poopy diaper, they're mopping up pickles on aisle 3 with
ammonia....I can't sort it all out; I'm too nauseous.

Because I am visually oriented (see more on this below), this may be my
first sense to become overstimulated. The fluorescent light is too
bright; it makes the room pulsate and hurts my eyes. Sometimes the
pulsating light bounces off everything and distorts what I am seeing --
the space seems to be constantly changing. There's glare from windows,
too many items for me to be able to focus (I may compensate with "tunnel
vision"), moving fans on the ceiling, so many bodies in constant motion.
All this affects my vestibular sense, and now I can't even tell where my
body is in space.

(Brae still struggles with this not near to the degree he used to. I remember being so proud when he was 3 years old and touched foam soap for the first time ever, and played with finger paints after months of therapy. Most times he just goes for it but there are times he hangs back with the messes or gets messy and then must immediately be cleaned or a melt down will ensue. He does well in most social situations but he does still get overstimulated.)

Receptive and expressive language and vocabulary can be major
challenges:

3. Please remember to distinguish between won't (I choose not to) and
can't (I am not able to).

It isn't that I don't listen to instructions. It's that I can't
understand you. When you call to me from across the room, this is what I
hear: "*&^%$#@, Billy. #$%^*&^%$&*........." Instead, come speak
directly to me in plain words: "Please put your book in your desk,
Billy. It's time to go to lunch." This tells me what you want me to do
and what is going to happen next. Now it is much easier for me to
comply.

4. I am a concrete thinker. This means I interpret language very
literally. It's very confusing for me when you say, "Hold your horses,
cowboy!" when what you really mean is "Please stop running." Don't tell
me something is a "piece of cake" when there is no dessert in sight and
what you really mean is "this will be easy for you to do." When you say
"It's pouring cats and dogs," I see pets coming out of a pitcher.
Please just tell me "It's raining very hard."

Idioms, puns, nuances, double entendres and sarcasm are lost on me.

(This is SO true with Braden to this day, he is very literal he takes things as you say them not as they might be meant.)

5. Please be patient with my limited vocabulary. It's hard for me to
tell you what I need when I don't know the words to describe my
feelings. I may be hungry, frustrated, frightened or confused but right
now those words are beyond my ability to express. Be alert for body
language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor"
or movie star, rattling off words or whole scripts well beyond my
developmental age. These are messages I have memorized from the world
around me to compensate for my language deficits because I know I am
expected to respond when spoken to. They may come from books, TV, the
speech of other people. It is called "echolalia." I don't necessarily
understand the context or the terminology I'm using. I just know that
it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am very visually
oriented. Please show me how to do something rather than just telling
me. And please be prepared to show me many times. Lots of consistent
repetition helps me learn.

(He does better with school work and just about anything if he is visually shown rather than told.)


A visual schedule is extremely helpful as I move through my day. Like
your day-timer, it relieves me of the stress of having to remember what
comes next, makes for smooth transition between activities, helps me
manage my time and meet your expectations. Here's a great website for
learning more about visual schedules:
www.cesa7.k12.wi.us/sped/autism/structure/str11.htm.

(We haven't done this in years but it was very helpful in the preschool years)


Don't let autism cause you to lose sight of the whole child.
Self-esteem is crucial.

7. Please focus and build on what I can do rather than what I can't do.
Like any other human, I can't learn in an environment where I'm
constantly made to feel that I'm not good enough and that I need
"fixing." Trying anything new when I am almost sure to be met with
criticism, however "constructive," becomes something to be avoided.
Look for my strengths and you will find them. There is more than one
"right" way to do most things.

8. Please help me with social interactions. It may look like I don't
want to play with the other kids on the playground, but sometimes it's
just that I simply do not know how to start a conversation or enter a
play situation. If you can encourage other children to invite me to
join them at kickball or shooting baskets, it may be that I'm delighted
to be included.

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups,
tantrums or whatever you want to call them are even more horrid for me
than they are for you. They occur because one or more of my senses has
gone into overload. If you can figure out why my meltdowns occur, they
can be prevented. Keep a log noting times, settings, people,
activities. A pattern may emerge.

10. If you are a family member, please love me unconditionally. Banish
thoughts like, "If he would just......" and "Why can't she....." You
did not fulfill every last expectation your parents had for you and you
wouldn't like being constantly reminded of it. I did not choose to have
autism. But remember that it is happening to me, not you. Without your
support, my chances of successful, self-reliant adulthood are slim.
With your support and guidance, the possibilities are broader than you
might think. I promise you - I am worth it.

And finally, three words: Patience. Patience. Patience. Work to view
my autism as a different ability rather than a disability. Look past
what you may see as limitations and see the gifts autism has given me.
It may be true that I'm not good at eye contact or conversation, but
have you noticed that I don't lie, cheat at games, tattle on my
classmates or pass judgment on other people? Also true that I probably
won't be the next Michael Jordan. But with my attention to fine detail
and capacity for extraordinary focus, I might be the next Einstein. Or
Mozart. Or Van Gogh.

They had autism too.

The answer to Alzheimer's, the enigma of extraterrestrial life -- what
future achievements from today's children with autism, children like me,
lie ahead?

All that I might become won't happen without you as my foundation.
Think through some of those societal 'rules' and if they don't make
sense for me, let them go. Be my advocate, be my friend, and we'll see
just how far I can go.

3 comments:

Another Suburban Mom said...

Great post! Very helpful in dealing with any child, not just a child with autism.

Every child has his or her own rhythms and limitations, and parents must remember what works for one child, does not apply to the other, even if they are identical twins.

Jennifer said...

Kelli...thanks for posting this. I think I'll use the list as a spin-off point for a discussion with my children...at various points through the years, we've worked on being understanding of other children who may not respond the way we expect them to for *whatever* reason. Instead of assuming "they just don't know how to behave" or "they just aren't being good", realizing that there may be other issues involved, and being understanding instead of condemning. I'm realizing it's probably time for another reminder in that area.

Braden does so well...you guys have worked so hard...I forget sometimes how much he and you guys have gone through, because he is just "one of the boys". :) I've really renewed my commitment to praying for all of you in the past week.

And as ASM said...such a good reminder in areas other than just autism. Although my children aren't dealing with the sensory issues of autism or other physical issues, there are a lot of similarities with the aftereffects of trauma issues. It affects *every* area of life and there are things that are very difficult for them because of that. As I'm sitting here typing, I'm realizing that may be part of why you have been *such* a huge blessing to my girls (and me because of that!) during co-op. God has given you the ability to see those "beneath the surface" needs and deal with them in a special way. You have no idea how much I appreciate you!

stacey said...

i think i had seen this before but i love reading it again!