Monday, September 07, 2009

The Early Days of Autism.

I've lost track of how many times I've been asked "when did you know Max was Autistic?". That's a tough question to answer. Scott claims to have known from a very early stage. I knew something was "up" with Max, but it took me a long time to finally get to the point that I could accept it, to actually say the word. Once I did it was a big relief to Scott who had long since felt I was burying my head in the sand. It was a big relief to me too, because it is a lot easier to fight a known enemy instead of licking your finger and putting it in the air to see which way the wind is blowing.

When I look back at video of Max, I can see symptoms of Autism from as early as 6 months old. He never really made strange with anyone, didn't get upset if I left the room or put him down, and his highs were super high (hysterical laughing fits), and his lows were devastating (especially when he was hungry because he refused to take a bottle and I wasn't home because I was running late). Being first time parents, we thought Max was just a laid back little dude, happy to be held by anyone. We thought we were lucky. Now that we have a second child, the difference is glaring.

Max never played with his toys. Not functionally or creatively. He liked to throw them, or push them across the floor. He didn't play peekaboo, wave hello or goodbye, or attempt to make any sounds except "dadadada". He liked to bounce on the couch, rocking back and forth, with quite a bit of force. He did this in this crib and against walls as well, to the point that he gave himself a welt on the back of his head, and his hair fell out in that one spot. We had to move him out of his crib and into a pack 'n play so that he wouldn't hurt himself and he wouldn't keep the entire house up all night with his rocking whenever he woke up. Other things we noticed were that he didn't respond to his name when called, (but he did respond when I sang), he didn't reach his arms out to be picked up, and he didn't point at all.

When we brought Max to our doctor at the age of 14 months, Autism checklist in hand, we weren't taken seriously. When we pointed out that he wasn't reaching any of his communication or play milestones we were told that these milestones were just guidelines, and that some kids reach them early, and some kids reach them later. We were referred for a hearing test (at my request) and told to come back in a few months. To this day I wish I had demanded a referral to a paediatrician. If I could turn back time, I would have refused to leave until I got Max into a doctor who would have taken our concerns seriously instead of brushing us off as nervous, first time parents. Instead, we continued our journey, wandering aimlessly, struggling to find services for Max, searching for an answer which we didn't find until December 2008, a year and a half later.

It's easy to have 20/20 hindsight. If we were to have another child with Autism, we would see the symptoms right away. Now that we've had another child, one who does all the things that babies are "supposed" to do, the difference is glaring. While I'm thrilled to see my daughter imitate, point, make strange, wave goodbye and play functionally and creatively without prompting, it also stings that Max didn't do these things, and when we expressed our concerns we weren't taken seriously.

What I would say to any parent with concerns about their child's development is that if you feel something isn't quite right, or that something is "up", explore every avenue, rattle every cage, and don't give up until you are satisfied that your concerns are being addressed and that your child is getting the care that he or she needs and deserves. And never accept being patted on the head and told not to worry because you area first time parent. Nobody knows your child better than you, so go with your gut.

5 comments:

  1. I find it really hard still to watch Khaled's old videos. I put some up on my blog but the baby ones, I just can't even click on. I look at the icons and just imagine them.
    Our pediatrician kept seeing him until 15 months but has was labelling then so she didn't think anything of it. He never rocked or anything. It wasn't until we moved to England that his anxiety and fears started coming out and in less than a year he has his label. I will never forget the crummy doctor's office in London where we got his diagnosis. I hate (and love that doctor) if that is possible. It cost me £350. I grabbed a sandwich, went home in the bus dazed and have not really slept since. That was 6 months ago.

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  2. Anonymous8:59 PM

    What an incredible, incredible, post. Thank you for it. It can't have been easy to live through all of that again. You've helped so many people.

    Li

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  3. Hey - you know what? I read through your post (twice!), and wanted to tell you not to beat yourself up. If I were you at the 14-month visit, I would have HAPPILY walked away, hearing that my concerns were just jitters. Ignorance is bliss sometimes, you said it yourself. You needed to go through that experience in order to come this far in your journey. Keep up the amazing parenting - I'm rooting you on.

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  4. Hindsight is 20-20 - at least you advocated for Max at a young age. We went to see our paediatrician and told him we thought Alanna (our 22 month daughter) was autistic with the M-CHAT in hand. He made a referral, but the developmental paediatrician has a 9 month wait list and we are still waiting for an appointment. We took the private psychologist route - waiting for that long just to get a diagnosis to be put on another waiting list to get funding to be put another waiting list to get the treatment was too much for us.

    I don't think any first time parent thinks, "wow that's odd my kid must be autistic." We thought Alanna was just a typical kid, but she was our only frame of reference. It was only when we started looking at other kids her age that we REALLY knew something was wrong. That and the Autism Speaks video library - which by the way - to anyone reading, is a great resource if you suspect ASD.

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  5. Anonymous10:08 AM

    WOW..WOW...WOW what awsome post, you should place this on You tube so many families would learn so much from this.
    You're not the only person who has been told this by so many doctors...so sad. Send this to as many doctors as you can!!!
    I hope you realize how many people you have helped through your blog.

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