In the beginning of December, I posted this article to my blog.  Ellen Notbohm, the author of the article, graciously asked me if I would instead link directly to the article due to copyright infringement.  Ellen just emailed me and let me know I could show the article on my blog!  Ellen is also the author of 1001 Great Ideas for Teaching and Raising Children With Autism Spectrum Disorders.  Pick up your copy today.  She also welcomes emails. 

---

What 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 or her behavior can be perplexing and downright difficult.

But the citadel of autism, once thought an "incurable" disorder, is now cracking around the foundation. Every day, individuals with autism show us they can overcome, compensate for, and otherwise manage many of its most challenging aspects. Equipping those around our children with a simple understanding of autism's most basic elements has a tremendous effect on the children's journey towards productive, independent adulthood.

Autism is an extremely complex disorder, but we can distill it to what I call The Big Three--sensory processing difficulties, speech/language delays and impairments, and whole child/social interaction issues.

Here is what every child with autism wishes you knew.

First and foremost...

I am a child with autism. I am not "autistic." My autism is 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)?

Next, sensory integration may be the most difficult aspect of autism to understand, but it is possibly the most critical.

My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life 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 I may appear withdrawn or belligerent to you, but I am really just trying to defend myself.

A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. 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 ammoniaI can't sort it all out, I'm too nauseous.

Because I am visually oriented, 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, moving fans on the ceiling, so many bodies in constant motion--too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space.

Receptive and expressive language and vocabulary are major challenges.

Please remember to distinguish between won't (I choose not to) and can't (I'm 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's much easier for me to comply.

I am a concrete thinker. I interpret language 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.

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.

There's a flip side to this--I may sound like a little professor or a 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, television, or the speech of other people. It's called echolalia. I don't necessarily understand the context or the terminology I'm using, I just know it gets me off the hook for coming up with a reply.

Because language is so difficult for me, I am very visually oriented. 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.

A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and 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.

Don't let autism cause you to lose sight of the whole child. Self-esteem is critical. 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 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'll find them. There's more than one right way to do most things.

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 don't 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, I may be delighted to be included.

Try to identify what triggers my meltdowns. This is termed the antecedent. Melt-downs, 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.

If you are a family member, please love me unconditionally. Banish thoughts like, "If he would just . . ." and "Why can't she . . .?" You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's 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'm 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. I may not be good at eye contact or conversation, but have you noticed I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people? And 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.

It 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.

Ellen Notbohm is an author and consultant in Portland, Oregon, and founder of Third Variation Strategies in Portland, Oregon. She can be reached at ellen@thirdvariation.com. Her column, "Postcards from the Road Less Traveled," appears in Autism/Asperger's Digest.

Evidently I need to go to school with DJ.  I must have been absent years ago the day(s) they taught us how to use scissors to cut a straight line.

DJ's going to think the elves were tipping the bottle when they were wrapping presents this year.  

A little background on WHY I decided to put DJ on Super NuThera:  It all started when I was going to take PIC out for her birthday in August.  Two days before, I had just purchased some Spiderman vitamins for DJ.  Two days later, DJ decided he REALLY liked the vitamins.  I came in from the from grocery shopping and saw him eating.  Pops was asleep, of course.  I asked what he was eating and told me the Spiderman vitamins.  Mind you, my son never does stuff like this.  Though I would never do this, I could probably leave him in the house and go out for a few hours.  He would just sit there and watch TV, or play video games.  I do put the meds up high (not like this matters, because his tall behind can reach everything I can), but that day Pops had given him his vitamins and he left them on the counter.

So, of course I start to panic.  I dump out all the vitamins and count them.  He ate about 10 of them.  Now I'm REALLY freaking out.  I called poison control and told them what happened.  Luckily, with his size and weight, he would need about 20 vitamins in order to even THINK about taking him to the ER.  PHEW!  But, seriously, I was scared beyond belief. 

Still being the scared, anal Mommy I am, I didn't go out that night.  Instead we decided we'd throw a little party for PIC at the house.  DJ's behavior was indescribable.  He was talking (he does talk alot, but it's usually about movies or other stuff - narrowed interests), playing, being very very social.  Major eye contact, focus, no tantrums, etc.  Of course he was up until 3am with all those vitamins in his system.  But I was amazed at the difference in him.

I mentioned it on my Asperger support group.  I joked around saying I should give him 10 vitamins a day if that's the kind of behavior I"m going to get.  One of the fathers on there started telling me about dye free vitamins and how they're really great and show some improvements.  He said his daughter was on Super NuThera and there were major improvements.

I tried the regular dye free gummy vitamins.  You can buy them at the local pharmacy.  Saw small improvements but nothing major.  After about 2 months, and many many days of research, I decided to go with the Super NuThera. 

He started on Super NuThera caplets a week or two before Thanksgiving.  He's supposed to get 3 a day for his weight but being the anal Mommy I am, I started him on 1/2 pill.  I increased his dosage by 1/2 pills every few days or so.  At the beginning of December, he was up to 3 pills a day.  1 1/2 in the morning before school and 1 1/2 after school. 

The most prominent change was in his tantrums/meltdowns, whatever you want to call them.  He has a very low tolerance for frustration.  The littlest tiniest thing could set him off.  I'm talking serious little things, such as picking up his jacket off the floor all the way up to bedtime.  He argued with me about EVERYTHING.  NOTHING was fair, etc, etc.  With autistic kids, once they get frustrated, it's really hard to get them out of that "zone". 

The side effects (if you get any) are not severe-at all.  One is an increase in hyperactivity.  DJ is hyper already so I dont' really see any change in it.  He's not hyper in a bad way...just always on the go.  It really doesn't bother me.  Parents have given their kids magnesia baths 3x a week to get rid of this side effect.

Another one I heard is a tummy ache.  Give the vitamins with food!  Don't give them on an empty stomach.  DJ never had a problem with this because I heard about this beforehand.  I always gave it at breakfast and snacktime. 

The last known side effect are leg pains which means the dose is too high.  I didn't start DJ on a high dose so I didn't have any problems with this.  Three are just fine for him. 

It's pricey, but they worked for him.  They do have trial sizes available for about $10 - they lasted me over a month.  Today I just purchased the full size which costs $50 (540 pills).  It will last approximately 6 months.  But $50 is really nothing to me as long as it works. 

DJ can swallow pills, which is why I give him the caplets.  He is on no other meds, no other vitamins.  I heard the powders and liquids are horrible tasting no matter what you mix them in.  One parent I know whose child will not swallow pills takes the capsules.  The open up the capsules and put it in a bowl of pudding.  No problems.

I was going to start DJ on the Feingold Diet in January (which is a step under the gluten free casein free diet.)  His teacher and I discussed and I'm going to hold off on it.  She didn't see improvements at first but an adult aspie I know told me it takes about 6 weeks to get them to start working at full strength.  He hasn't been on the three pills for six weeks yet and we want to see how he acts on them next month.  Maybe there will be more improvements. 

There has been one or two days he hasn't gotten his afternoon dose.  Watch out!  The frustrations come back that easily. 

I love me some good news!  Yesterday I had a parent/teacher conference at DJ's school.  His teacher told me DJ is doing SO MUCH BETTER with the new vitamins I have him on.  I am so glad.  I have been noticing a significant improvement at home, but they haven't really seen it at school except in the past few weeks.   His tantrums have basically become non-existant.  Well, I guess because there used to be so many, they seem so little now.  He doesn't get as frustrated as much.

She said he's doing well on all of his classwork.  He's starting to pay attention more.  She thinks as the weeks progress, he might be less distracted.  His report card was all B's and 2 C's.  The C's were in Art and Music.  (HUH?)  True, DJ is not big on art...AT ALL!  But he loves music.  Absolutely loves music.  But, I don't care.  As long as he passes and he's doing well on the other subjects I'll be happy. 

All in all, I'm a happy camper with the report.  Now I don't feel too bad for dropping $300 on him for Christmas.  I still don't know about all this mainstream stuff.  I don't think they'll be able to mainstream him without meds and I'm really not trying to go that route.  All the kids in his class are medicated.  Luckily DJ is so cute, they ignore the fact he is mega hyper.  His teacher actually put bungee cords on his chair so he wouldn't rock out of it. 

In school they've been learning about the different holiday traditions.  We're sort of catholic:)  He comes home the other day and decides we need to start celebrating Hanakkuh (sp?) and Kwanzaa along with Christmas every year.  Whatever, little man.  If that's what you want, that's what you'll get.  I did tell him though to only expect presents at Christmas.  The other holidays we're just going to celebrate spiritually.  No gift giving.  Momma's wallet can't take the hit!  This weekend I'm going out to pick up the Kwanzaa candles and stuff because we have to start celebrating that on the 26th. 

Looks like Dec 2005 is going to be a little busy for me:)  I think he's just looking for an excuse to party.

Ok, not REALLY.  But this picture of him is hilarious.  Matter of fact I can't even describe it.  Take a stroll over to Teeters's Thoughtpad and check it out. 

It seems as if I'm a popular one.  Why, you ask?  Remember Mr. Big and the lightbulb fiasco.

Mr. Big is up to his old tricks.  Didn't I break up with his sorry ass way back when?  How come he kissed me today in the elevator?  What the fuck was that all about?  Don't I have enough problems (men=problems)?  Lucky for him the elevator doors opened right away and there was people standing there so he didn't get to hear what was on mind.  Such as WHY THE FUCK ARE YOU KISSING ME?

So Dawn and Michelle want more.  So here goes.  This guy works and lives at my apartment complex.  About a year ago he came to fix something and I thought this guy was H - O - T!!!!  His lips - he has this habit of licking his lips while he's talking.  It's one of the sexiest things I've ever seen!  He has dreamy bedroom eyes and...wait, I digress. 

Of course I see him all the time.  He FINALLY asked me for my number a little while ago and we've been talking and hanging out since then.  The first time was kind of rushed so it wasn't as great as I thought it would be:)  But last night, WOW.  As I said, he rocked my world.  He's definitely a keeper. 

To break it all down, he's hot, funny, intelligent, and he's great in bed.  What more could a girl ask for???  Let's not forget, he can fix EVERYTHING. 

Ahhh, life is so good.  Merry Christmas to me:) 

My world got rocked tonight.  WOW!  Oh.  My.  God.  How the hell did that happen?  Now I need to get myself to bed.  (That's never happened before either.)

As we all know, holidays can be a stressful time for our kids.  Especially, those kids with autism or the like.  Personally, I do all my "partying" at home.  Which of course means I do all the cooking:)  Everyone is invited.  This way, if DJ needs to chill out, he can go into another room and feel comfortable.  Others aren't able to do this.  Here is a holiday letter you can share with your family and friends.  (I actually do post this up so people can read it.)

I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful.

As you probably know, I am challenged by a hidden disability called autism or what some people refer to as a pervasive developmental disorder (PDD).

Autism/PDD is a neuro-developmental disorder which makes it hard for me to understand the environment around me. I have barriers in my brain that you can't see but which make it difficult for me to adapt to my surroundings.

Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or have difficulty making friends. We are all different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time, like you would if you landed on an alien planet and didn't understand how the inhabitants communicated. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by ok. But if something, anything changes, then I have to relearn the situation all over again! It is very hard.

When you try to talk to me, I often can't understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you -- I am not. Rather, I am hearing everything and not knowing what is most important to respond to.

Holidays are exceptionally hard because there are so many different people, places and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it's very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.

If I cannot sit at the meal table, do not think I am misbehaved or that my parents have no control over me. Sitting in one place for even 5 minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people -- I just have to get up and move about.

Please don't hold up your meal for me -- go on without me and my parents will handle the situation the best way they know. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it's no wonder eating is a problem!

Think of all the senses involved with eating: sight, smell, taste, touch AND all the complicated mechanics that are involved with chewing and swallowing that a lot of people with autism have trouble with. I am not being picky -- I literally cannot eat certain foods as my sensory system and/or oral motor coordination are impaired. Don't be disappointed If mommy hasn't dressed me in starch and bows. It's because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable!

Temple Grandin, a very smart adult with autism, has taught people that when she had to wear stiff petticoats as a child, she felt like her skin was being rubbed with sandpaper. I often feel the same way in dressy clothes.

When I go to someone else's house, I may appear bossy and controlling. In a sense, I am being controlling because that is how I try to fit into the world around me (which is so hard to figure out!)

Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn't mean you have to change the way you are doing things -- just please be patient with me and understanding of how I have to cope ... mom and dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it "Self regulation," or "stimming'. I might rock, hum, flick my fingers in my face, flap my arms or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or partaking in an activity. The grown ups call this "perseverating" which is kinda like self regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable, and I don't want to come out of that comfortable place and join your hard-to-figure-out-world.

Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my mom and dad if they let me "stim" for awhile as they know me best and what helps to calm me. Remember that my mom and dad have to watch me much more closely than the average child. This is for my own safety, preservation of your possessions, and to facilitate my integration with you tippies (what we autistics fondly call you neurotypical folk!). It hurts my parents' feelings to be criticized for being over protective or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.

Holidays are filled with sights, Sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you tippies but it's very hard work for me to conform.

If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don't possess the neurological system that is required to follow tippy rules. I am a unique person -- an interesting person. I will find my place at this celebration that is comfortable for us all as long as you'll try to view the world through my eyes! Please pass this along to families you feel may benefit from it ... it has already helped us this past Thanksgiving.

Yeppers, we won...AGAIN.  Unfortuntely, didn't help me much on my football pool.  I needed them to win by 10:(