Monday, December 6, 2010

Autism Awareness Day- New Mom Edition

When you're a new parent, you constantly find things to worry about because you have so much time in your hands, you're practically begging to solve all the world's problems.  

It's like, before you even flush that child out of your womb, you find yourself worrying about your baby having a complete set of fingers and toes.  For the first few months, you volunteer to stay awake, holding your index finger up against your newborn's nose until you can no longer feel your arm, making sure he's still alive, and breathing, because so and so's sister-in-law's officemate's friend's baby died of SIDS two years ago.  Once you get over that, you find yourself worrying about a different set of issues yet again: it could be problems with feeding, separation anxiety, daycare drama, it never really ends.  Point is, we worry because we give a shit, and we will probably take that with us until the day we die.  

In my previous post, I guest blogged in Jillsmo's Yeah, Good Times to talk about autism from a new mom's perspective.  Reading blogs like hers gave me a clear view of what to expect, and more importantly, how to understand and accept.  It erased all my misconceptions and prepared me mentally, should I be confronted by similar circumstances.

Today,  allow me to take your stress levels up a notch once more to tackle the thing that's stuck in the back burner of our brains when it comes to the development of our rapidly growing babies.  Jill will do me the honor of being my first guest blogger to do an intro to Autism 101-- things we should know as new parents.  

Before she dives right in, I'd like to urge all of you to follow her on Twitter.  This woman's funnier than anyone you can ever watch on TV and even if you ignore her, she'll  continue to provide you with round the clock entertainment, for FREE!! 

Go for it Jill!
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Tina guest blogged for me this week, and she wrote something (awesome and) serious about autism and how my writing about my child with autism has changed her perspective on it. That was pretty cool; it’s amazing to hear that my incoherent ramblings might actually have an impact on what other people think about autism. Seriously cool. When she asked me to guest blog for her, I figured that much of her readership was other new moms like herself, and I thought I would also write something serious about autism, in the hopes that it might be helpful to her readers.

If you have a newborn, baby or toddler, chances are you’ve thought about autism. The latest statistics are scary: 1 in 110 of children in America have autism; 1 in 70 for just boys. You may also be looking at the crazy things your infant or toddler is doing and think there could be something wrong with them. You may know nothing about autism or you may have heard bits and pieces about the things that kids with autism do and I would like to take this opportunity to tell you some things that I wish somebody had told me when my son was a baby.

It’s important to know that the weird things autistic kids do can also be things that typically developing kids do. Head banging, toe walking, rocking, lining things up, repetitive behaviors, fucking freaking out for no reason that you can tell, etc. So if your child is doing something you think is unusual, that their little peers are not doing, it may be something that you should address, but it’s not necessarily cause for concern about autism.  In my experience, the most noteworthy difference in my 2 children for their first few years were not things that Child 1 did, it was what he didn’t do; mainly, pointing.

Pointing, or a lack thereof, is the number one diagnostic indicator of autism; my pediatrician missed it, and I had no clue. I don’t just mean they stick their arm out at things, what’s important about pointing is that 1. They see something neat and 2. They want you to see it, too; it is a lack of social reciprocity that defines this condition. I don’t mean they need to be pointing at every little thing that crosses their line of vision, just once or twice is fine, but if it’s that they never point, or once pointed but then completely stopped that you will have cause for concern. A child who is not talking at 18 months, but who is pointing, may have a speech delay, but not autism.

Having said that, if you DO have concerns, it is likely that your pediatrician will tell you to “wait and see” what happens, particularly if you have a boy. Boys develop slower than girls, yes, we know this, but I don’t think I have any friends whose kids have autism whose pediatrician didn’t say to them “boys develop slower, let’s wait and see” when they brought their concerns to them. If you really are concerned, trust your instincts and don’t accept “let’s wait and see” as an answer. Insist on an evaluation, because the earlier you start treatment, the better the long term prognosis for your child, and depending on where you live, these things can take a really long time. When in doubt, ask other parents. Other parents are the best source of information you can find; better than the established medical community, in my opinion.

I hope this has been helpful, maybe some other folks can stop by and add some things they wish somebody had told them. Feel free to ask questions if you like and I will do my best to answer.

19 comments:

Ann said...

Thank you for this post. I agree with Jill that many times it's better to hear other parents, and this is exactly the kind of thing I find useful.

tulpen said...

"Let's wait and see" was what I heard from every doctor that treated my son... not for autism, for a shitload of other crap. I think it annoyed me then, but it was all they had. The doctors don't have all the answers. fuck. They don't have half the answers.

Big Daddy Autism said...

The no pointing thing was definetly a big sign. My autistic son was our first so we really didn't know what to expect as far as milestones. He clearly missed everyone in the book. When my daughter was born 3 years later, we kinda said "Ah. That's has it's supposed to go." Still doing it today when they are 13 and 10.

Cheryl D. said...

Excellent post, Jill!

jillsmo said...

BigDaddy, we're doing the same thing with our 5 year old. "OH! THIS is what they're supposed to do!"

Mrs. Monster said...

Jill is *so* right. Trust your gut...I had friends telling my my little monster was "fine" but I pushed for evals and now we're looking at an autism diagnoses. Waiting is more like it. We're about half-way through the process but everyone seems to be in agreement that it's 99% likely to be autism. Waiting on the last panel of "experts" to evaluate him before we get the official diagnoses, which will lead to more resources to help.

...and the waiting lists are long where I am. I'm not in the US so I don't know what it's like there. But where I am? It's ridiculous. I'm on the phone constantly just trying to get appointments. It's frustrating, but you are your child's biggest advocate. So if you think there's a problem - push for answers. Never accept the wait and see attitude if it doesn't feel right to you.

....oh. And great post Jill. :)

Ashley said...

Great post Jill and Tina. It really helps new moms to know what to look for because we are all so clueless and the drs miss so much!

Tina@ www.theteethingmom.com said...

Jill totally nailed the Autism 101 challenge. I actually offered her a weekly segment here, look at her following!

Karly said...

Wow, Jill, for the longest time I had a bit of wonder about my eldest daughter, Afton. The pointing thing is a HUGE deal for us, because Afton DOES point, at random open spaces all the time. The one interesting thing that I wonder about, though, is how big of tool is the pointing thing in diagnosis?

I ask this because recently while at the Phoenix Children's Hospital with my younger daughter, Delaney, we sat beside an autistic boy and the only thing he would do is point and ask "What's that?" over and over and over again. To everything. My daughter Afton does the exact same thing, to the T. It was almost eerie.

Just wondering your thoughts on that?

jillsmo said...

Karly, that sounds more like a repetitive/self stimulatory behavior, actually. Unless there's actual curiosity about the object and they really want to know what it is, in which case there would be eye contact involved, as well. He would have to point, say "what's that" and then look at somebody for the answer. Otherwise, just pointing and repeating doesn't show that social connection that I mentioned. What does your daughter do when she points and asks?

Karly said...

Jill, sometimes she does look for an answer and sometimes she doesn't. In general though, she is very bad at eye contact, which is something I have kept in the back of my head for the longest time. When I try to have a direct conversation with her, she'll look at me for barely one to two seconds then look away, and I always have to hold her by the chin and move my face to get eye contact, and it still doesn't last.

jillsmo said...

Well, first of all remember that I'm not a doctor I'm just a mom, so don't just take my word for it. If you have concerns, and it sounds like you do, get an evaluation.

That said, what's important is not just the pointing or the eye contact separately, it's the combination of the two. My first child always made excellent eye contact, so much so that the Developmental Pediatrician diagnosed him at 18 months with Global Developmental Delay and said (and I quote) "he's not anywhere on the spectrum because he's making great eye contact." She didn't say a word about pointing, though, and 6 months later he was "upgraded" to PDD-NOS.

You can test these things in 2 ways (although for #2 I think it only works if they're less than 18 months):

1. Point to something, look at HER (not the thing), and say "LOOK AT THAT!" Does she look at it? My first child would look at my finger, like a cat, or he would look at me. My second child would look at the thing I was pointing at.

2. Give her something to hold and then try to take it away from her, but don't; play a tug of war so that you're both holding it. Where does she look? My first child would look at the thing and try to pull it from me. My second child would look at ME and try to pull it from me.

I hope this is helpful. Feel free to email me for more info if you want jillsmo@gmail.com

frazzledmomma said...

Logan pointed. He has always ALWAYS had excellent eye contact. However, he didn't walk or talk or babble or make messes. He would just scoot around on his bum in a circle, to form bigger circles. Kids would be playing, jumping over and around him, and he never EVER stopped making circles inside a circle. I took video of it, and took it to his pediatrician. My thought was, I can explain this all day, but if I SHOW you, you'll know what I'm talking about. I took 15 minutes of video. He watched 20 seconds of it, and said, "So, here's your referral to early intervention."

Lynn said...

Oh the pointing...I can remember literally longing for it. The shared attention part of it is the big thing...too many parents (like myself) are in denial and don't want to believe, so they look for any kind of pointing as a reason to think everything is fine. Audrey pointed at pictures in books and I thought this counted...NOT. They are supposed to be "distal pointing" and then turning to you and being interested if you are seeing it too. Great post Jill!

jillsmo said...

I remember longing for the pointing, too, and getting really really depressed when every other kid in the fucking world was pointing and my kid wasn't. He did start pointing when he was 6, though

mommetime@ymail.com said...

great post!...thanks Amy http://mommetime.com/

kitten said...

Thank's for the very informative post Tina and Jill.

A Mountain Momma said...

My heart goes out to every mother, and father, who goes through the worrying and possibly the reality of autism. Thank you for the great information and markers of autism! Great post..

Babymommablog said...

Great post Jill!

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