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Autism Awareness Month: Day 5

Posted: April 5th, 2011 | Author: | Filed under: Autism | Tags: Autism, Autism Awareness Month, Birth to Three | 11 Comments »

I was chatting on Twitter the other afternoon and people were throwing around the most recent statistics:

1 in 80 boys.
1 in 110 kids. 

When autism was first mentioned to us we both took to Google and found a statistic of our own- those numbers above go up13% for identical twins.  I can’t remember where I found that but it had to be at the top of the search results and I know we’ve had people quote this one back to us since then.  Also, 60-90% of identical twins with a sibling diagnosed with ASD will also be diagnosed with ASD-(this one is from the cdc).

It made me think back to when I was pregnant with the boys and we found out they shared a placenta and were at risk for Twin to Twin Transfusion Syndrome*.  There was a 15% chance they would develop this potentially fatal disease while in utero and we had weekly monitoring to keep track of their development ” just in case”.  They never did develop TTTS and we are so lucky to have dodged that altogether.

There was an 85% chance they would NOT develop TTTS.  It was still monitored closely and we worried about it every hour until we were cleared around 30 weeks.

Fast-forward a few years and we have identical twin boys who potentially have a 13% higher chance of developing autism, even higher since they are boys and even greater chance that if one developed it, the other would too.

Here’s the kicker.

We weren’t doing anything to monitor their development closely.

On the contrary.

When we question their delays (and speech was really the only glaring thing) we are told they are

– because they were early
– because they are twins
– because they are boys
– because they are identical
– because twins have their own language

And of course everyone and their sister knows someone who has a  cousin who didn’t talk until he was 4 and now he’s the best trial lawyer in the state. <—– THAT is not helpful! 

No one tells you to have an extra critical eye, even if it’s painful and difficult.  They tell you to relax and not worry about it.

Of course there are the milestones we’re all looking to meet and the obvious signs to watch out for.  But there is such a range on those milestones.  The Well Baby visits that revolve around the “may have” mets and the “probably have not” mets and the “should have” mets and of course the list above explains away any questions we had about anything….

We weren’t AWARE that they were more at risk.  We didn’t even know the statistics surrounding twins and Autism until after we had the initial educational diagnosis.

It certainly doesn’t change anything, but you would think that with all the work we do to monitor and keep babies developing before they are born, they would be given the same kind of care once they are here.

* I am in no way connecting TTTS and Autism!  I am just using it as an example of a similar percentage of occurrence and the lengths we go to to monitor that situation vs what we do for Autism.

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11 Comments on “Autism Awareness Month: Day 5”

  1. 1 Bonnie said at 9:20 am on April 5th, 2011:

    Wow, I'm right there with you. Identical twin boys, check. TTTS watch/weekly ultrasounds, check. Delayed development, check. Making excuses for the delays, check. Amazing.

  2. 2 erinclot said at 9:06 pm on April 5th, 2011:

    So many people have the same experience. I wonder why? I'm checking your blog out, adding you to my feed.

  3. 3 Bonnie said at 8:23 am on April 6th, 2011:

    Really, do you know of more blogs about twins with ASD? I'd love to read them……if you have time, post a list or something!

  4. 4 John Clotfelter said at 9:40 am on April 5th, 2011:

    Great post honey. Its just crazy how they will do all of this monitoring for something that would affect them for the duration of the pregnancy and yet there wasn't much monitoring for Autism which will impact them for the rest of their lives

  5. 5 Ruth C. Camenisch said at 5:10 pm on August 1st, 2011:

    Hi John. It's your dad's cousin Ruth in Monett. I am mesmerized by Erin's amazing ability to creatively address a huge life challenge. Also, her blog is great. I don't blog, but I am enjoying hers. I'd like to get in touch with you to share some Clotfelter family history. Email me if you are interested.

  6. 6 erinclot said at 12:55 pm on August 3rd, 2011:

    Hi Ruth, I wouldn\’t want you to go through a lot of trouble! I find family history very interesting myself. Thank you for your kind words, it is very cathartic to write it all out some days.

  7. 7 Liv Lane said at 11:44 am on April 5th, 2011:

    i don't have twins, but i have one beautiful boy with special needs. his symptoms mimic autism, but he is very social…so his therapists say he is just "very complicated." this journey with him has taught me even MORE how important it is to trust my own intuition. we, too, grilled his doctors about obvious physical delays, speech delays, cognitive delays. we were told he was a late bloomer. told by friends that it's normal for a second child to develop slowly…living in the shadow of a bigger sibling. i didn't want for there to be something more to his delays, but deep down i knew something was off. i'm relieved i persisted because my little guy now has the support to help him build his confidence and capabilities step by step, every day.

    thanks for this post – AND thanks for mentioning mine the other day. happy to have found your blog!

  8. 8 erinclot said at 9:05 pm on April 5th, 2011:

    Trusting your gut is so huge. I pushed it off so many times in the beginning and the wheels came off at the worst possible time. Moms just know.

  9. 9 Blogs Search Engine said at 1:34 pm on April 5th, 2011:

    Blogs Search Engine…

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  10. 10 Janine said at 10:20 pm on April 11th, 2011:

    I didn't read all of your posts and you may have covered this, but is there a good (not overwhelming!) place to read about signs of autism, things to look for, and more about it? Or maybe you could write about what you noticed specifically. I keep seeing things for Autism "Awareness" but I'm not learning anything and the most I've heard it talked about is on the show Parenthood. I'm guessing there is more to it than that.

    Not your job to educate people, obviously, but I'd love to read some firsthand info if it isn't too troubling to write out. 🙂

    P.S. Your boys are beautiful!

  11. 11 Sar said at 1:40 pm on August 20th, 2011:

    Hi there – I have nephew identical twins who had TTTS while in utero, and I suspect Aspergers, and want to approach this with my sibling. I would welcome ANY information on any possible links, suggestions, anything to share so that they still want to speak to me as a well-meaning sibling who wants them to get the help and support they need…and thanks for your blog, as it's been a great place to start.

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