New Year, New Rules

So the year started out rocky.  We've been in and out of school thanks to snow and sickness. Of course, any change in routine really messes Aidan up, so we've been struggling somewhat to have good days. Overall though, it's been a really good year. We got back Aidan's annual goal progress report which allows us to see how well his IEP is working for him and what kind of progress he's made toward his goals this year (hence the name...). We had two major goals.

• Goal: By the end of the 2010-2011 school year, Aidan will exhibit appropriate social skills by controlling his excitement, using an inside voice, asking for a break, and staying seated 8 out of 10 times.
• As of 10/08/2010: Some progress had been made, and mastery was anticipated: "He loves being in Kindergarten! He has been asking for breaks and controlling his excitement. He has his days but the General Ed teacher reports that he has done great!"
• As of 12/17/2010: Some progress has been made, and mastery was anticipated: "Aidan is a great typical Kindergarten boy. He is using an indoor voice, asking for breaks, and staying seated. We are working on him listening and staying on task. He loves to make friends. We are working on the dos and don'ts of how to play with friends and not get in trouble.
• Goal: By the end of the 2010-2011 school year, Aidan will improve his basic living skills by demonstrating the ability to fasten and unfasten small button closings on his clothes and tie his shoes and write his numbers 1-10 in 3 out of 4 trials.
• As of 10/08/2010: Some progress had been made, and mastery was anticipated. "He is able to fasten his buttons and clothing. We are working on tying a knot on a shoe. He is doing great in writing his numbers but has to be reminded to slow down and write smaller."
• As of 12/17/2010: Some progress has been made, mastery is anticipated. "Aidan is working on tying his shoes, he is able to zip up his own jacket. He is able to write his numbers when he is on task and focused. If he is not focused, staff will make him redo his writing and he does very well the 2nd time."

So all in all a very good report. We're excited to see that he's doing so well and enjoying his second go at kindergarten.

Today we had a meeting with Ms. Simmons (the kindergarten teacher) and Ms. Annie (the autism unit teacher) to discuss preparing Aidan for first grade next year. Since he started at Johnson he's been using a system that required him to earn 4 baseballs in order to earn a reward at the end of the day (a toy, computer time, time in the sensory room, etc). He is also required to earn all of his baseballs to get to play his DS when he gets home. Basically what this means is that as he progresses through his day, he'll earn a token at certain intervals if he's met the behavioral expectations. If he hasn't done well (i.e. pushing, running in the hall, refusing to do his work) then he doesn't get the baseball. Ms. Simmons has decided that it is time to phase out the baseballs. She has her own behavioral system in her room that involves check marks for bad behavior and consequences for those checks such as time outs or losing the opportunity to participate in the sharing portion of show-and-tell on Fridays. Her biggest concern about the token system is that Aidan obsesses over how many baseballs he's getting. We're hoping that if we get rid of this system it will free up his concentration for other things. She also asked that we not make a big deal at home out of behavioral problems at school since he gets punished for them at school.

Secondly, we discussed the end of sending him back to the autism unit for the last 15-20 minutes of every day. He used to go down to Ms. Annie's room for the last 45 minutes to an hour, but that was distressing him for a couple of different reasons; he really wanted to stay with his group, and he felt like the autism unit was the "baby room". Because of this they switched the majority of his time in the autism unit to the morning as soon as he gets to school. Currently he spends about 30 minutes in the unit every morning to get prepared for his day. Ms. Annie talks to him about the day's schedule (library or art or show-and-tell) and any changes from routine such as a pep rally or Ms. Simmons being out for the day. They also work on social stories (A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format.) to address behavioral issues or learn rules for social interactions such as conversation or how to play with friends. The planned change will be to phase out the time in the afternoon that he has been going to Ms. Annie's room. Because the goal is to mainstream Aidan as much as possible, we want him to stay with his class so that he is a part of the normal school day and can enjoy being part of the group. We'll still have him go to Ms. Annie's room in the morning - he really needs this for starting his day off right, and he really seems to enjoy starting his morning that way - but in the afternoon he'll simply stay in Ms. Simmons room and go with the rest of his class to the car line.

Apart from those changes, Aidan will continue to have an aide in class with him at all times and will still have the safety net of Ms. Annie's room should he need to work independently because of behavioral or focus issues. Ms. Simmons stressed his need for an aide. She said that he tends to wander and drift during his work or reading time and needs that support to keep him focused and on task. This is something we very much agree on and I'm glad, because I fear that if we took this support away it would set him up for failure.

The IEP meeting to determine what happens next year should happen in May. Until then, we hope to see lots more progress and lots of fun in Ms. Simmons' kindergarten class. Aidan loves his friends and he loves Ms. Simmons and the predictability of her classroom and her rules. We're so grateful to have her and Ms. Annie to teach and support Aidan every day.

Best Friends

For autistic children the idea of friends is very different.  Their interests are often so focused on one or two specific things (for Aidan it's trains and storm-chasing, but it's branching out and often includes Star Wars or related things).  Because of this, it is often hard for neurotypical kids to relate to autistic children because they get bored with the autistic child's single-minded interest in something.  Also, autistic kids have a hard time understanding social mores.  There is no "polite" where the truth is involved.  If you're bothering him, you're bothering him and he's going to tell you.  If he has something to tell you about something you said (even if it doesn't seem related) he's going to interrupt and tell you (he may even think you're done talking because he can't read your face to know that you were continuing a thought).  Most neurotypical kids don't have the maturity or the patience to put up with the oddities that make up autism, and so they do one of two things: they either make fun of the child endlessly, or they just stop playing with the child.

Aidan has two true friends (I would say three, but he hasn't seen Hayden in so long, I'm not really sure where their friendship stands).  One of those two friends is autistic as well.  Jacob is the same age as Aidan and about the same level of functionality as well.  Because they live by most of the same social rules, they get along well.  When one has reached his limit of socialization, the other is usually at about the same point and they separate with no feelings hurt to give themselves time to reset and refresh. They both have similar single-minded interests and so they can share those focuses with each other without getting bored.  It's interesting to see their interaction, but I understand why they get along so well.

Aidan's other best friend is Jonas.  Jonas is a completely typical little boy, in every sense of the word.  What's very interesting though, is that he somehow seems to understand Aidan's actions and oddities and needs and he responds to them with compassion and patience instead of fear or disgust.  Don't get me wrong - the two have arguments and fights, just like any other two little boys would.  But Jonas doesn't fight unfairly, he doesn't take advantage of Aidan's limitations of language or social understanding (and trust me, I've seen most every other kid Aidan has played with do this very thing).  Aidan's imagination and social competency has grown so much since he's started playing with Jonas and it's amazing to watch him grow when he's around this little red-haired kid.

What I'm curious about, and may never learn the answer to, is how and why Jonas, unlike all the other neurotypical kids Aidan has met, is able to mold his own behaviors and sociality and methods of playing to suit what Aidan needs.  He's open-minded and compassionate (and very mischievous!) and he genuinely enjoys playing with Aidan.  I wish I understood what was different about how this kid sees the world so I could use it to help other people better adapt to their peers who are anything but typical.  What lessons has this six year old kid learned that the rest of us need to be taught?

Scary week

Tuesday afternoon began a few of the scariest days ever.  Aidan had been playing in and out of his room all day, had just eaten lunch, and we were all just chilling out.  Jeremy had just gotten back from some job interviews and was sitting on the couch next to me when we heard Aidan start crying/screaming.  I got up and went in to check on him (he'd been watching television quietly) and he was on the floor with his television on top of him.  I pushed the tv off of him (it's a 19 inch old school tube tv) and tried to get him to talk to me.  He was bleeding and had a huge knot between his eyes on his forehead, and was screaming in pain but wouldn't respond to me or really even look at me.  He was completely limp and I couldn't figure out what was wrong with him.  I finally sat him up to clean the blood out of his mouth and he threw up.  At this point, we decided he had a concussion at the very least and he HAD to go to the hospital.

We loaded Aidan up in the car, and Jeremy drove - I had to hold Aidan up because he wouldn't hold up his head, was still very limp, although conscious.  He kept dozing and so we kept him awake because I wasn't sure if he was just sleepy or if he was passing out.  He repeatedly asked where we were while we were driving to the hospital.  When we got to the hospital, they were pretty quick about getting him back to a room, which was very good I believe.  They checked him out and were as concerned as we were I believe.  Aidan's body temperature was low (96.4 F) and he was vomiting and lethargic and most non-responsive.  They let him go ahead and go to sleep/pass out while they were doing their exam.  They took him back to get a CT scan done on his head to check for bleeding, swelling, or fractures and fortunately that came back clean.  Because he was still acting unresponsive and was continuing to vomit, the doctor consulted the Ped's doc who advised that Aidan spend the night for observation.

That night, Aidan continued to be unable to keep even liquids down and was fairly out of it - he didn't speak hardly, even to tell us something hurt.  Most of the time he just slept.   They put a heart monitor on him and checked his vitals every 2-4 hours just to be safe.  The next day around noon the pediatric doc came in and checked on Aidan, and because Aidan was still very out of it, not responding well to us talking to him and still unable to keep anything down, the doctor decided it was best for him to stay a second night.  By that evening, Aidan was acting a bit better.  Still tired and very quiet, but able to keep liquids down and actually responding to whatever we said to him or asked.

By the next day Aidan was doing so much better so the doc let us go home.  Just the process of packing up and driving home exhausted Aidan and when we got home we ALL went straight to bed and slept for a couple of hours.  Aidan actually ate some food at the hospital earlier that day and I think he also had a little bit of a pb&j sandwich before going to sleep that night.

Today, Aidan is mostly back to himself.  He has a nice shiner, and still tires easily, but he's up and moving around more and is much more talkative.  He even has his bratty attitude back for the most part!

I think we might buy a flat screen for him, even though the television that attacked him still works just fine.

Things Every Parent of a Child With Autism Wishes You Knew

You know from a previous post what every child with autism wishes you knew.  Now you can see what every parent of a child with autism wishes you knew.

 From Katie Duzan:

• Kids with autism are not bad, naughty, or wild hooligans that are a danger to society. They are not products of bad parenting or unloved children. In fact, you'd be hard pressed to find better parents than a lot of the parents of autistic kids. Most families have a single autistic child and other neurotypical kids - proving that it's not logically the 'nurture' that is missing. Our kids do not need physical punishment. Here are some studies on why physical punishment is a bad idea anyway, let alone with children who have problems with relationships and development as it is.

• Autistic does not mean Rainman. Yes, some autistic children are savants. But not every autistic child has a "gift".

• On the same note, not all autistic children are mentally retarded. Quite the contrary, most autistic kids are just average IQ. It's just hard to test when you can't tell what the child understands because they don't speak.

• Our kids may look the same, but they're not. Autism is a hidden disability - meaning that if you looked at a photo of an autistic child, you wouldn't be able to tell from their looks they had a disability. That doesn't mean it's not real. Type 1 diabetes is an invisible disability, too. Keep in mind invisible doesn't mean it's not there. You just have to look closer.

• Autism is not a cop-out. Visit a household with an autistic child during the day to witness what autism REALLY is. I promise, it will blow your mind.

• We parents are not martyrs. If you think special needs' parent's patience extends to rude and/or ignorant people, think again. We are very protective of our children, and we get defensive and angry just like everyone else. Don't be the one to push that button.

• Our kids can hear you, even if they're not looking. And odds are, they understand exactly what you're saying. They don't respond to things like other kids. Watch what you say, because autistic kids also have fantastic memories.

• Stimming may seem odd, but it's perfectly natural. You probably stim, too. Click your pen? Chew on your pencil? Play with your hair? Chew gum? Yeah, that's stimming, too. My kid likes to run in circles more than click his pen... It's a matter of preference. But everyone does it.

• We are just parents. They are just kids. We will make mistakes. So will you.

• You have no idea what really goes on in our lives. We are juggling meetings with the school district, doctor appointments, constant barrages of evaluations along with therapies and teacher meetings. We get crushed at least once every six months by evaluations that compare our child to others and note their massive failings (rather than their progress, in most cases). We go through it so much that there's not even enough time for us to heal. There is a constant gaping hole in our heart from hearing about how our children are not the same.

• We want to know about our kids just like every other parent. Please don't think that we use autism as an excuse. We can't fix a problem unless we know about it. It is more of a challenge to teach our children, but we want to teach them.

• Pride and ego left us long ago. Go to a grocery store, doctors office or meeting with an autistic child throwing a tantrum and you would totally understand. It fails to phase us parents after a few hundred trips, although the stares and uncaring looks still sting.

• Despite the challenges with our children, we love our lives. We love our kids. We don't think they need to be 'fixed' - just 'helped'. We want our children to succeed - on their own terms. We don't ever want pity, although a kind ear is appreciated more than you could ever imagine.

• We hate talking about the "could have's" or "should have's" of autism. Especially if they can't be fixed. We can't go back in time and change whether or not we got an epidural, had a c-section, had preterm labor or fed our child formula. If there's nothing we can do about it, there's no use telling us. We guilt ourselves constantly anyway, we don't need anyone else's help. There's a difference between helpful and hurtful. If you walk that fine line, remember to be kind.

• We love our kids with all our hearts. Because of (not in spite of) their differences. They have taught us more than we ever imagined we would know. To us, different is our normal.

• We know our kids love us. We don't need hugs or kisses to prove it (although some autistic kids are affectionate!). We know anyway.

• No two autistic kids are alike. Some kiss everyone they see. Some hardly stim at all. Some rock in the corner. Most are very happy. If there's a diagnosis, there's no need for second guessing. And if the parents think that their child has autism, they're probably right. Disabilities are frightening to parents, and it takes a long while to accept the possibility. If a parent voices a concern, they have already analyzed it to no end. Accept the possibility.

• Autism diagnoses are not handed out easily. It takes months to see a specialist, and usually several appointments to get the autism diagnosis. Doctors are very sure before they label a child, and won't give a diagnosis if there's any question whatsoever.

Storm Chasin'

So, as you all may know (or not know...), Aidan wants to be a storm chaser when he grows up.  Now the thing is, he has a hard time with loud noises so the whole thunder thing gives us a bit of a setback.  Basically I've just had to remind him that if he wants to be storm chaser then he's going to have to LIKE thunder and get excited by it instead of scared.  So far I think it actually worked.

Anyways, the other day it was kind of storming off and on and when we thought it had passed we ran out to run some errands.  Well, the storm clouds returned and it started raining and when we got out to the car we noticed what looked a lot like a wall cloud.  Aidan assured us that this was, in fact, most definitely a wall cloud (he's the storm chaser, he would know).  So we kind of humored him and since it wasn't raining THAT hard (at least, not yet), we drove a bit out of our way and as far as he was concerned we were storm chasing.  Not even halfway home the bottom dropped out.  We literally couldn't see more than 10 feet in front of us, the wind was gusting really hard, it was lightning like crazy.  Aidan was thrilled to be out in a real live severe storm and kept talking about the wall cloud and telling us all kinds of weather stuff.  Scary drive but in the long run quite fun.

So now, whenever there's any hint of clouds in the sky Aidan thinks it's going to storm and he wants to go storm chasing.  He's so into it that he tried to convince us to buy him a video camera when we were at Best Buy on Tuesday.

I'm pretty sure that didn't have anything to do with the meltdown he had as we were checking out - a melt down that lasted like... 45 minutes total.  That was a painful meltdown with lots of injuries all around.  And whatever it was that set him off, seems likely to be the same thing that sparked my migraine less than 24 hours later.  Probably weather related as well.

Either way, the point of this whole thing is just that Aidan is still going strong on his plans to be a storm chaser.  He wants me to call a storm chaser and find out if he can ride with them on one of their storm chases... I told him they probably wouldn't let him... for insurance reasons of course.

End of Year IEP

Today was the IEP meeting to determine what will happen to Aidan next year.  He's done great so far this year (at least since he got moved to Johnson), and we are happy with the progress he's made.  Thankfully, they didn't want to try to move him back to Creekside (I'd have had a come-apart if that had even been mentioned as a possibility) yet.  I wanted him to move on to first grade, but it was decided that he didn't do well enough in the reading portion of testing to move on.  They think he'll do better repeating kindergarten and really solidifying the skills and knowledge offered there, rather than moving on to first grade which is significantly more difficult.  Plus, it requires him to work independently and he's not really ready for that yet.

They're going to work on keeping him in the mainstream class for a longer portion of the day, and in order to do that they're going to try to make at least a part of the classroom more sensory friendly for him.  He'll keep an aide with him for as long as he needs one, and then will transition to a peer partner if possible.

I'm not sure how I feel about any of this.  Maybe I'll write more later once I have had more time to process it... and am not sick.

From "Love That Max" : Top 20 Reasons Moms of Kids with Special Needs ROCK!

Love That Max: Top 20 Reasons Moms of Kids with Special Needs ROCK!
Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

Melt Downs

Last week Aidan had a huge meltdown on Wednesday and another the next day.  He had gone so long before that without having a meltdown - probably at least 6 months, maybe more.  I don't know what was different or what had been bothering him that made it so easy to set him off, but one simple little thing didn't go the way he expected it to and he fell apart. 

Wednesday (which was when the full moon was - could this have been the underlying cause?) the trigger was as simple as taking a lego toy away from him because he took it outside.  It wasn't a punishment, and he could still have it inside.  I explained to him that if he took it outside to play with it with his friend, that he could drop it and break it and even lose pieces.  He threw a mini fit and so I told him that he could come inside (it was bordering on a meltdown at this point, but I didn't recognize the signs).  He dried it up and went back to playing with Robby (the next door neighbor), so I thought everything was alright.  Not five minutes later, I heard him in the garage screaming his head off.  I went out there and he was crying and screaming about his lego toy.  He wouldn't tell me what was wrong, but he was obviously mad about something.  Once again, I told him he could come inside if he couldn't dry it up.  This time he didn't though, he only became more enraged.  Because of that I attempted to take his hand and lead him inside - of course, that didn't work.  His self-control completely dissolved at this point, and as I tried to pick him up to carry him inside he began to shriek and to hit and kick me.  It took me a couple of minutes to even manage to pick him up.  Stupid me, I still didn't recognize that this was a meltdown at this point. 

Once I got him inside, I put him in his room and closed the door.  Usually he calms himself down and cries for a little while and then is perfectly fine.  Not this time.  He began hitting the door, throwing things (trash can, toys, toy boxes, tried to throw the television), and screaming.  I went in and he started hitting and kicking me, so I held him - I finally recognized that this was a meltdown, but of course that didn't really matter at this point.  Once I got him to stop hitting and trying to throw things, I sat in the floor and he laid with his head in my lap and allowed me to rub his back.  He was still screaming and crying "mamamamamamamamamama" - not anything to do with me, this is just a noise he makes when he's extremely stressed or overstimulated.

This whole meltdown lasted around 30 minutes, and afterward he wouldn't talk or look at me.  He had calmed down enough that I felt it was safe to leave him in his room.  A little while later he came out and ate dinner and was talking and making eye contact again.  When I put him in bed, he apologized for being unhappy and throwing a fit, telling me he couldn't get control.  He was aware it was a meltdown, even if I wasn't.

The next day at school he had a meltdown as well, this one only last about 15 minutes according to the aide.  Apparently he couldn't sit down (he told me he couldn't), and when he melted down he told her (or rather screamed to her) that he couldn't get control.

I don't know what sparked this behavior.  He's been perfectly fine since then.  I have no idea what happened to be able to prevent it in the future.  Maybe it was my stress over school and planning a bridal shower. Maybe it was the full moon.  Maybe it was a string of events over the previous several days that none of us could have known would lead to a meltdown.  Whatever it was, hopefully I'll recognize earlier in the meltdown next time, that it IS a meltdown instead of fueling it into a bigger meltdown.

Self-fulfilling Prophecies and Service Providers who take advantage of parents.

It seems so sad to me that there are doctors who, when they diagnose a child with autism, would tell the parents that their child will never speak or be potty trained or live on their own.  It seems sad to me when parents mourn their child's diagnosis as if they were told that their child had died or would die next week.  Autism is not a death sentence!  How many children's parents gave up after being told their child would never say "I love you, Mommy" or be in a normal classroom or any of the other things that other parents take for granted?  How terrible!  It seems like this is a self-fulfilling prophecy.  If you and your child are told that what they have is all that is possible and they just have to deal with it, then isn't it possible that they will never try for better? 

What's worse is that there are doctors who will twist it and make it worse.  "Unless you take your child to a speech therapist, an occupational therapist, a behavioral therapist and take these medications and do chelation therapy and bariatric therapy and eat only certain kinds of food, then your child will be terrible and never talk to you and can't accomplish anything.  Parents spend their entire lives trying to make a better life for their children.  It's what we do.  And when we're faced with a problem we didn't expect then we ask professionals for guidance.  But what's terrible is when these professionals take advantage of us and our desire to do what's best for our children.  We spend thousands or millions of dollars on the various therapies and classes and diets that we're told will help.  But does it really help?

I can't afford all the different therapies that might benefit Aidan.  When he was diagnosed I was a single mom who made under $30k a year.  I didn't understand the GFCF diet, and didn't really see how I could consistently change his diet across all the different caretakers he had (myself, my mom, his babysitter) and even afford to buy the best possible foods for him.  Even though the doctor that diagnosed him said he needed speech therapy, I couldn't get the school system to agree, so I had to work with him on his speech.  I couldn't get them to do occupational therapy either (teaching him basic life skills like potty training or buttoning his pants or throwing and catching a ball) so I had to teach him those things. 

The thing is, I think I've done a pretty good job with him between myself, my family and most recently the amazing people at his school.  He talks more than ever, although you can't always understand him.  He's completely potty trained (which a year and a half ago I worried might not happen) and can button his own pants.  He's learned to ride a bike and throw a ball and play video games and play make believe.  It's all the product of a lot of hard work: his AND mine as well as my parents, Jeremy, our family and friends, and his teachers most especially Miss Annie. 

I guess I just feel like a lot of doctors and service providers and Jenny McCarthy's see parents who are desperate to help their child, and they take advantage of their fear and helplessness.  As parents we're supposed to be able to fix everything and when we can't then we feel like we're letting our children down.  There are people who prey on that and I really think they stink for it.  We're told our child can only be "cured" if we do xyz therapy and abc diet and take them to Dr. So-n-so, so we do what we're told.  Maybe sometimes the therapy is necessary, I don't deny it, but I think that a lot of it is ridiculous and experimental and outlandish and just a way to make money off of desperate people.

I'm done ranting now.

Autism Awareness

April is Autism Awareness Month!  I'm both excited and saddened that we get our own month now.  It's great that we have a chance to educate people and gain support for our cause, but it's sad that Autism Spectrum Disorders are common enough for us to get an entire month dedicated to our children.  In honor of the month I've gathered some information for those of you who don't necessarily know all the in's and out's of autism.  My information comes from the CDC and Google Health, but you should also check out Autism Society of America.  Don't forget to join us Saturday morning for our Autism Walk - or find one in your own hometown if you aren't in Huntsvegas!

And to all of you who have given us so much support since Aidan's diagnosis, thank you!

Prevalence

• It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD.
• ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls.  However, we need more information on some less studied populations and regions around the world.
• If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD.  Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
• Studies in Asia, Europe and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%.

•  

• Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.

Economic Costs

• Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million.
• Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater.

Signs of Autism (there were a lot of "a-ha!" moments the first time I read these after Aidan was diagnosed)

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. Children with autism typically have difficulties in:

• Pretend play
• Social interactions
• Verbal and nonverbal communication

Some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive type of autism.
People with autism may:

• Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes)
• Have unusual distress when routines are changed
• Perform repeated body movements
• Show unusual attachments to objects

The symptoms may vary from moderate to severe.
Communication problems may include:

• Cannot start or maintain a social conversation
• Communicates with gestures instead of words
• Develops language slowly or not at all
• Does not adjust gaze to look at objects that others are looking at
• Does not refer to self correctly (for example, says "you want water" when the child means "I want water")
• Does not point to direct others' attention to objects (occurs in the first 14 months of life)
• Repeats words or memorized passages, such as commercials
• Uses nonsense rhyming

Social interaction:

• Does not make friends
• Does not play interactive games
• Is withdrawn
• May not respond to eye contact or smiles, or may avoid eye contact
• May treat others as if they are objects
• Prefers to spend time alone, rather than with others
• Shows a lack of empathy

Response to sensory information:

• Does not startle at loud noises
• Has heightened or low senses of sight, hearing, touch, smell, or taste
• May find normal noises painful and hold hands over ears
• May withdraw from physical contact because it is overstimulating or overwhelming
• Rubs surfaces, mouths or licks objects
• Seems to have a heightened or low response to pain

Play:

• Doesn't imitate the actions of others
• Prefers solitary or ritualistic play
• Shows little pretend or imaginative play

Behaviors:

• "Acts up" with intense tantrums
• Gets stuck on a single topic or task (perseveration)
• Has a short attention span
• Has very narrow interests
• Is overactive or very passive
• Shows aggression to others or self
• Shows a strong need for sameness
• Uses repetitive body movements