Ankyloglossia and Autism

I think it’s difficult to get a diagnosis for Autism when your child is high functioning. Doctors tend to write off the child’s behaviour as “quirky” and say that they’ll grow out of it. At least it was in our case.

We knew something was up with Aaron from the time he was born. He preferred being by himself, detested being undressed, didn’t walk until he was 16 months old, was fixated with certain objects. We brought him to the doctor who told us that “he’ll catch up” and “he’ll grow out of it” and “everything’s normal”. We were still concerned but accepted the doctor’s opinion – at first.

Then came Adam. Adam came home from the hospital and quickly developed a fever. He also couldn’t bear to be away from my arms. Adam also couldn’t latch on and all formulas made his stomach upset. So I spent the better part of the next year constantly holding Adam while trying to find a formula he could stomach (Armand found one – thank goodness).

After we got Adam eating and sleeping with no pain, we turned our attention back to Aaron’s “quirks”. With every checkup we asked the doctor about Autism (by now I’d done research and was pretty sure what we were dealing with). Every time we were told it wasn’t that and to wait. At one point our doctor referred us to a specialist. The specialist said again that “nothing was wrong” and “I was over protective”. By the way, I really dislike being told that I’m overprotective – it’s insulting. One thing the specialist noticed was that Aaron was tongue-tied (Ankyloglossia). He asked how we never noticed that before. Well it was because he was talking and because we never played the stick out your tongue game. Sticking out your tongue is rude – why would I teach that?

Anyway, he had surgery to repair the tongue tied and was put on a waiting list for speech therapy. Ok good. In the meantime, he started school. At the first parent/teacher interview we were asked if we considered the fact that Aaron may be Autistic. Yes we did, but the specialist said no. Then the weekend babysitter (who was a teacher and child specialist from the Philippines) asked us if we considered the fact that Aaron may be Autistic. Hmmmm, interesting that two different people who deal with children everyday should ask us that in the span of a month.

So back to the doctor we go. This time the doctor said that he didn’t like to give the diagnosis of Autism because it was overused.

Finally the speech therapy started. We met the coordinator and had our initial meeting. She took Aaron and did some tests to see where his speech was. Then she came out to talk with us. Well what do you know! One of the first things she asked was if we considered the fact that Aaron may be Autistic.

I felt like yelling “Yes! We did! I’ve done research! His teachers do! His babysitter does!” I don’t remember what I said exactly but I do remember that I didn’t yell.

This wonderful woman arranged for the doctor to come into her office while we were there and do another assessment. This time she stressed to him her concerns and ours. This time the doctor listened and gave Aaron the initial diagnosis of PDD and referred him to Bloorview in Toronto that specialized in Autism. Total time period from initial concerns to diagnosis – 3 years.

Finally!!!

By now, we also noticed “quirks” in Adam. He needed constant companionship, had to grasp something in his hand all the time, slept very little (VERY little), he didn’t like anything in his mouth (food included). Added to that his activity level and we were pretty sure that Autism and ADHD were involved here. with Adam it was a little easier to get a diagnosis – mostly because we knew we needed to be done and we were prepared. We got letters from his teachers and insisted on an assessment.

Now, years later, the boys have the official diagnosis of autism – directly from Bloorview. And if Bloorview says your child has autism – then by golly gee, they have autism. Adam also has ADHD. They are enrolled in the best school I’ve ever come across with some of the best teachers you could ever meet. The boys are flourishing and learning. Life is good.

So I guess what I’m saying here is that if you believe that there is something wrong, insist on testing. Go to the doctor’s armed with information (facts not opinion) and keep harping until you get the tests done. It’s our job as parents to advocate for our children. It’s not easy, but that’s our job. The doctor only sees your child for a few minutes every year – you see your child every day. You KNOW your child.

It would have been easy to blame the doctors for not noticing it sooner but I can’t. Oh I was angry at the time but then I thought about it. They only saw the children for only minutes. And seeing that they are high functioning, it was easy to write off their “quirks” as just that – quirks. I get that. I blame myself for not insisting more. We got lucky – really lucky. If it wasn’t for the speech therapist I don’t know where we would be today. If it wasn’t for Aaron being tongue tied, our story would be very different.

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