Monday, 21 January 2013

When Your Family Doctor

One thing which has consistently surprised me as I move in the autism world is how many family doctors don't take parents' concerns seriously.

Part of me can understand why.  After all, we've all seen the footage of the hysterical first-time parents (and we've all usually made some doozies ourselves).  I rushed Alex to our family doctor because I thought he had crystals in his urine but it turned out it was the silicone from small rips in the diapers.  Okay, oops.

But if a parent is worried about their child not communicating or about strange repetitive behaviours or self-injury, then there should not be a dismissive automatic "kids are like that" approach.  It would be great if doctors had the time to ask questions rather than rushing through appointments to cram the maximum number of visits into a day.

My doctor not only dismissed all my concerns about Alex by effectively telling me not to worry my pretty little head about it, when I told him about the diagnosis, he shared with me his belief that autism wasn't real, it was just North American parents being too demanding of their children.

The final straw was when I was concerned that Alex might be having absence seizures.  (He would pause as if frozen and stare into space, sometimes for over a minute.  If you called his name or touched him, he wouldn't respond.)  He reluctantly agreed to a consult with a neurologist but then insisted on spending twenty minutes lecturing me about my weight.

Excuse me?  I don't care if I'm too fat to waddle through the door or if standing up leaves me out of breath.  If I'm concerned my five year old is having seizures, this is not the time to bring it up. 

We'd been looking for another doctor for some time previous to that but after that I stopped going to him entirely.  If we needed something, I went to a walk-in clinic.

This person is no longer my family doctor.  It took me two years to find someone else, but eventually I did.  She's been very good about listening to me and if she doesn't always know the answer, she's always happy to research or refer. 

Another note in her favour, she spotted Dave's enlarged thyroid and realized he might have cancer.  Our old doctor refused to even test his thyroid even though Dave had all the symptoms of low thyroid hormones, with the exception of irregular menstrual cycles.  Looking back at family pictures, there is a visible lump in Dave's neck for at least the last seven years. (At least, there is now that we know what to look for.)

The point of this exercise is not just me venting about my old doctor.  It's to let you know how important it is to have a supportive pediatrician or general practitioner.  If your doctor is reluctant about referrals or tends to dismiss you, think very hard about finding someone else.  At the very least, talk to them about their concerns and find out if you're dealing with a potential roadblock.

Sometimes doctors make mistakes and that's part of being human.  I've also known several doctors who were initially dismissive but apologized once they realized autism had been overlooked.  In an ideal relationship, you bring initimate knowlege of your child and the doctor brings detailed medical knowlege and the two of you work in partnership to figure out what's wrong.

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