Sunday, June 27, 2010

I can't prove any of these claims...

There are a bunch of things that happen in the life of an autistic person that don't make any sense.

Now there's an understatement.

These are events, habits, tendencies that parents report to each other, but learned very quickly NOT to mention them to doctors or therapists. Unless you enjoy people looking at you like you've grown a second head.

Billy and I have both been sick for over a week. Nasty cold, maybe a flu (though I have this stupid thing that says people who say they have the flu just have a cold and are being overly dramatic). Whatever it is, it's hideous. Jumping with random abandon from noses to threats to chests to heads. Sounds attractive, doesn't it?

In the throes of the odd illness/recovery/illness again experience, though, the 'spooky sickness improvement thing' has happened again. Maybe it's because he's been home, free of social pressures. Maybe it's because he's had time to revel in the stuff he loves. But whatever the reason, through a rivulet of green boogies, has come huge strides forward in language and general resilience.

He's having longer and longer conversations. They make more sense. He's spinning concepts around in his head. He's understanding more subtext and inference.

What is that about?

I'm not the only parents who notices this. Sometimes it comes after a fever. Sometimes after an illness without fever. But it happens often. It's confusing because many of us have learned to be frightened of illness, after nasty regressions in toddlerhood.

Related to this phenomenon is the fact that many of us have noticed that our kids run temperatures that are significantly higher or significantly lower than the normal range. Billy's on the low side, and can be fighting a bug that is so tough he's hospitalised without ever running a fever. Again, what's going on with that?

On a similar vein, parents say their ASD kid is the healthiest of all their siblings and peers. They never get sick, ever. When all the other kids are falling, their autistic one is a trouper. I've read somewhere that this is a sign of a hyper-functioning immune system, as potentially concerning as an under-functioning one. Clearly, Billy is not one of those kids...

Seriously, what do these things mean? I know it's all anecdotal, but... the fact that people could be bothered reporting them to each other must mean something. There's absolutely no reason for us to randomly make this stuff up.

I've said before I hope that we are on the thin end of the autism learning wedge right now. I'm in the camp that says some autism (at the very least) is an auto-immune condition. There just seems to be compelling evidence in our lives that neurological inflammation, gut inflammation, immune irregularity and the stuff we call autism are tied very tightly together.

But... who am I to try to make sense of all of this?

I'm not a medical professional, not a therapist, just an involved observer. Although... the amount I think about this stuff might just qualify me to grow that second head after all.


DQ said...

I am nodding my second head as I read...
Perky is fairly robust - he gets colds but that is about it. We are grateful for that! But we have noticed he sometimes has huge sleeps then wakes up and has more vocabulary, improved communication skills. He has been doing this all his life. We call them explosion sleeps. And I think if I told the GP she would think I was defective, nice as she is. I CAN tell our fabulous chiropractor/alternative guru/voodoo woman extraordinaire, though! (I think that is a great job title, I shall tell her this next time) She is open minded and understands the body systems and their connections. I really think that we have barely scraped the surface of understanding how we all function/dysfunction. I am with you on the auto-immune factor. I believe in the genetic factor, too. I think there are so many factors it is one huge complex puzzle of contradictions. Confusing? Yes! But the answers are there. They just have to be.
OK, I think I had better stop ranting now, it makes my other head cranky.

Anonymous said...

Once again- fabulous blog Valerie :) I learnt SO MUCH!

But "AGAIN" my child is the odd-one-out.

He rarely (if ever) gets sick, - even when the germs have knocked out everyone else in the household.

He actually retreats into himself on the occasions that he actually is unwell (the opposite to his norm) and I now understand (thanks to you) that he must have hyper-functioning immune system.

Basically, I've discovered that in (almost) all the areas that Billy has extremes - Harley has them in the polar opposite areas but also in extremes!

Anonymous said...

I laugh and cry at the same time and then I wish to pull my hair out!

My son has always had a low body temp (32-35) but when he gets a fever omg its never below 30-42.
The strange thing is even when he was a very small baby he has cpme down with these huge fevers with no explanation of what is causing it!

We would race him to the ER at 3 months old with a fever of 42 and no doctor could tell us what was wrong. They would do urine and blood and nothing would come back so we would be sent home.

It pains me to think his Autism could have been prevented if the doctors did further testing and found the core of his fevers.These fevers were not just 1 or 2 a year but 1 or 2 every 3 or 4 weeks.

Gosh Valerie you have really made me think today and yes it does hurt (lol) I wish I had more time and energy to go back and say to these doctors and ER's why didn't you do more? why did you dismiss me as a nerves first time mother? There may have been a real problem that has now caused serious damage and you did nothing?!

WOW you really got me with this post. Why did I not trust my gut?

Thank you for a wonderful thought provocing post :) love it!

Anonymous said...

sorry that should have said fevers of 39-42