AUTISM AWARENESS

April is Autism Awareness Month! While having a "flavor of the month" usually kind of irritates me (because if its worth having a "month," it probably deserves a lot more attention than that), I'm thankful for the efforts that come about in that month that may help the cause...whatever it might be.

This April, I encourage you to get involved for autism (I like using a little "a"--takes some of the power away from the word, don't you think?). This disorder can be devastating to some families. Effective therapies for these children (1 in 94 boys! 1 in 150 children total!) averages $60,000 per year for ONE child! William is on the very high end of the spectrum and without insurance or other funding, his 2 therapies each week would average over $20,000 in one year, so just imagine what it must be like for families where the child is in therapy all day, every day.

So in this post, I'm going to let you know about just a few of the ways that you can get involved. Check around in your local community and I'm sure you'll find many more this month. And at the end, I'm going to post a summary from "Ten Things Every Autistic Child Wishes You Knew." Check out the entire book from your local library to learn more :) Which brings me to the first thing you can do to get involved...

Educate yourself! There are a myriad of books and websites available on the topic. Some great, some not so great. Some I agree with wholeheartedly, others that just make me angry. All worth reading...because how can you stand firmly on what you believe and be able to defend it if you are ignorant of the opposition?

Support the national Autism Awareness campaigns! Some of these are ongoing. Toys R Us, for example, takes donations for Autism speaks at each of their registers and online. If you make a donation at the store, they'll even give you a nifty little sticker to wear to show off your support. Others are annual...like Comedy Central's The Night of Too Many Stars, hosted by Jon Stewart, on April 13th at 8:00pm EST. Check out VH1 Classic's support of the cause through their VH1 Rock Autism campaign.

Take a test drive! Okay, not really, but by taking a virtual test drive of the new Chevy Malibu via the Autism Speaks website, you're helping Chevrolet get closer to their goal of raising $1 million for autism research. What an easy way to help out!!

Take a walk! Autism Speaks puts on "Walk Now for Autism" events all over the country throughout the year. I have the pleasure of being on the committee to bring this walk to Columbus for the first time!! Can't make one of these big ones or there isn't one in your area? Check around...there are often smaller, local autism organizations that put on walks, fun runs, and marathons, especially during the month of April. Or, join our "Walking for William" team, even long distance! Contact me to find out how!!

Support corporate sponsors of autism research! I've already mentioned Toys R Us and Chevy, but others include:

Barnes & Noble--Five hundred Barnes & Noble stores across the country will partner with Autism Speaks to host special Storytimes in April as part of Autism Awareness Month

TJ Maxx--from April 6 through April 26 at 800 TJ Maxx stores nationwide, customers will be invited to purchase an Autism Speaks puzzle piece at checkout for a donation of $1. No purchase is necessary to make a donation, and all proceeds will benefit Autism Speaks

Modell's Sporting Goods--through April 26th, customers at all 135 Modell's store locations throughout the Northeast will be able to purchase $1 Autism Speaks puzzle pieces at check-out, with all proceeds being directed towards autism research

The Bachman Company --The Bachman Company recently launched its "edible awareness" campaign with delicious, new puzzle piece-shaped pretzels. The Puzzle Pretzel is now available in grocery stores in the Northeast and online at http://www.bachmanpretzels.com/. Bachman will donate five percent of the proceeds from the sale of the Puzzle Pretzels to Autism Speaks

Build-a-Bear workshops--in April your $1 donation for the purchase of a purple satin heart will be distributed through the Build-A-Bear Workshop Foundation to Autism Speaks.

Get political! Learn about the Expanding the Promise for Individuals with Autism Act of 2007 (EPIAA) and encourage your your local legislators to cosponsor.
Ask your Representative to cosponsor the "Expanding the Promise for Individuals with Autism Act of 2007" (H.R. 1881)
Ask your Senators to cosponsor the "Expanding the Promise for Individuals with Autism Act of 2007" (S. 937)

Help out! Know someone who has a child with autism? Give them the night off by offering to babysit, or run errands for them. Brainstorm all the wonderful ways you could assist a family affected by autism...the possibilities are endless and don't have to take up a lot of your time, money, or energy.

Advertise! Show your support by sporting any number of autism awareness items. There are keychains, T-shirts, window decals, buttons, tote bags, etc. I've found several that I really like at these two spots: Stitches4Autism and Cafe Press.

These are just a few of the things you can do for Autism Awareness Month. I'm sure you can come up with more on your own or find others in your area. And now, as promised, the Ten Things Every Autistic Child Wishes You Knew (sorry about the screwy spacing...that's what I get for copy & paste :) :

Note: this is not to be confused with "10 Things the STUDENT with Autism Wishes You Knew"
by Ellen Notbohm. This is a different list of things. It is focused wider on children, not just
students. -Ed.

1. I am first and foremost a child. There is more to me than a one-word description like "autistic." I know you know this. Why would you not? So, do not be concerned about calling me autistic even if others say it is wrong. It makes no difference to me if you say I am an autistic child or a child with autism. What you do about me is far more important than what you say about me, anyway. Please pay attention to my real problems and not ones made up by some adults. I already have enough problems as it is. There is no need to make up ones to add on.

If I have autism, then I am disabled by it. Saying that famous or unusual people like Einstein, or
Mozart, or Van Gogh were autistic says autism is not a disability. Those people were not
disabled. I am. You do not help me by pretending or telling others that I am not disabled, even if
that makes you feel better. I am dependent on the public's support. Telling people that I am not
disabled, only "just different", threatens my care. Please take autism seriously so others will,
too.

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect
of autism to understand, but it is arguably the most critical. It his 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 loudspeaker 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 am
dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become
overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems
to pulsate and it hurts my eyes. 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 and proprioceptive
senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to).
Receptive and expressive language and vocabulary can be major challenges for me. 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 literally. For example, to me it could
mean that I think about concrete. It could also mean that I am made of concrete. 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."

You may use the word "like" or "as" to help me learn to compare, but do not exaggerate. If
something is described "as cold as ice", it should really be that cold. Pick words carefully. "High
as a kite" is not the same "high" as in being drunk, yet the expression is used to compare the
two. "I play the shoe horn" is not funny to me. It is confusing. It is difficult to understand expressions that play on the different meanings of the same word. Idioms, puns, nuances, double entendres, inference, metaphors, allusions, hyperbole or exaggeration, sarcasm and much of other people's humor are lost on me. I have a sense of humor. I find different things funny.

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 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. Speech and language therapists and behavior specialists
knowledgeable about autism can provide a range of learning aids tailored for me. Contact my
local school district or disability agency to help you find them.

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. The
autism needs fixing, not me. 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.
I do best in structured play activities that have a clear beginning and end. I don't know how to
"read" facial expressions, body language or the emotions of others, so I appreciate ongoing
coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's
not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you
OK?"

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.
Try to remember that all behavior is a form of communication. It tells you, when my words
cannot, how I perceive something that is happening in my environment. It is my situation and my autism that needs to be fixed, not me.

Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food
allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound
effects on behavior.

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. Understand my autism is a disability.
Autism the disability is not some wonderful gift. It cripples. But autism is treatable and I may be able overcome being disabled.

Thank you so much for reading this far and for all of your support! Now get out and do something! :)