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Thurday Guest-Blogger Day: “How We Discovered Our Boys Had Autism”

Todays guest post is from Erin Clotfelter, mom of autistic twins. You can catch up with her www.theslackermom.com and her boys at www.playerstobenamedlater.com

Because April is Autism Awareness month, I thought I’d share a little about how we discovered our boys had autism.

When my twin boys were born in 2008 my husband and I had no idea what we were getting ourselves into. As the weeks flew by after they were born (why do the weeks of pregnancy go so slow in comparison?) we tried to keep up with their milestones. I bought baby books and blogged although I didn’t do a very good job of keeping up with recording milestones on either of those platforms. I look at their (mostly) empty baby books and blame it on working full-time and having twins. We also kind of got to a point where it was hard to keep track of things because they seemed to do them on their own schedule.

When my expecting club friends were talking about their babies rolling across the room to get to where they wanted to be, my boys were content to hang out propped up in their Boppys or jump endlessly in the Johnny Jump Up. When the other kids started to sit and crawl and walk, we were still a few weeks (sometimes months) behind.

Of course before every trip to see our pediatrician, I’d make a list of what they had done, what they were eating, how many diapers a day, what kind of sleep schedule they were on etc. so I could competently fill out the questionnaires when I got to the appointment. I didn’t want to forget anything and I wanted to be prepared with answers when he started asking the routine questions.

For the most part the boys were meeting goals as they should. The things they lagged behind in were easily justified by these 4 words: Premature Identical Twin Boys. No one was very worried that they didn’t sit or crawl or talk by X number of months. By 12 months they were both walking and starting to talk, but not a lot.

I would hear about kids their age spouting off words and I would chime in that my boys just had a few words each and hear back that I shouldn’t worry- their son only had 20-30…mine only had 10-12 with a smattering of signs at the peak of their talking phase. I’d hope that we were just on the edge of something big too. We were, just not the “something big” we were looking for.

At 15 months there were no new words and by 18 months there were no words at all. There were other things we’d noticed. Some hand flapping (only when they were really excited during Super Why!) and some walking on tip-toes (not all the time, just sometimes) and maybe there was a bit of a difficult time getting eye contact (maybe we need to turn off the Super Why!) they didn’t really “play” with their toys and were content to sit by themselves and look at their books.

We were starting to worry and we were still pretty sure the biggest problem we were looking at was this lack of language.

When we talked to friends or relatives or even our pediatrician about it, they all said not to worry. The language would come! They aren’t even 2! Just relax! If you are still worried at 2, we’ll look at an evaluation.

And we tried to live with that.

But there was that nagging worry. And being 2010 we both went to Google, which brings up a lot of very scary things if you start looking where you have no business looking.

Finally, in a bit of a melt-down of my own while hurdling down the freeway in the Clotfelter family truckster towards a dusty old town in Montana with three kids under 2, just 30 minutes away from an impromptu family reunion, someone on Twitter gave me a bit of advice: You don’t need a referral for Early Intervention.

*I don’t need a referral?*

I’ve been driving myself crazy for the better part of a year over something that I could have called in and made an appointment for by myself?

Why did I not know this?

Sure, I’ve heard about Birth to 3, Early Intervention, but I guess I never really knew what it was or how you went about getting it or who it was for…

When I got home 2 weeks later, I made the call. Things started falling into place. We had a home visit to evaluate for language delays and we were instead handed an early autism diagnosis. Within a month the boys were riding the bus to school across town twice a week and we started to see immediate changes.

It’s been an interesting ride so far and we are only about 5 months in. One thing I’ve found is many (if not most) of the people I have met had a similar situation. Not many people are encouraged to get an evaluation until their kids hit age 2.

That is not good enough.

If you notice any of these signs- even one, you should look into getting your child evaluated either by a developmental pediatrician or through an organization such as Early Intervention which can be contacted through the county that you live in. Every child in the US is eligible for services through EI. You do not need a doctor’s referral for EI. The earlier a child can start getting the therapies he or she needs, the better the outcome.

These are the Red Flags for Autism:

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
  • No babbling by 12 months
  • No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age
(From Autism Speaks)

I have found the information on the internet to be quite overwhelming at times. A simple Google search can run the gamut and leave you reeling, often worrying even more. Autism Speaks and The Autism Society of Minnesota have been my “safe” sites since our diagnosis.

We all want to do the best for our kids, and sometimes it can be difficult to know when to listen to our gut and when to wait and see. In the end, we are the ones who are with our kids day and night and we need to trust our instincts.

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