Monday, February 25, 2013

When autism comes with Fragile X (or vice versa)

I wonder who the people are who read this blog.  I'm pretty sure a good percentage of you are my friends and family.  (Hi mom! Hi dad! Hi friends!)

Some of you are also parents of children with Fragile X.  Some are other relatives of folks with Fragile X, or one of the FX-related disorders.

I imagine a lot of you though, are in the autism world.  Because that world is so much bigger than the Fragile X world.

If children with autism are from Holland, children with Fragile X are from somewhere smaller.  Lichtenstein, maybe.

No, that's not quite right, because Fragile X and autism are so closely related, they'd have to at least be adjoining countries.  Maybe Fragile X is Belgium.  No, that can't be right because Belguim is actually a little bigger than Holland.

Maybe FXers are a mixture of Dutch and Belgian.

Sorry.  Wandered off the subject there for a bit.

Anyway, I got to thinking about how it is to have children with autism and FX both.  There's of course, much more press about autism.  More research, more articles, more studies, more treatments.  Because there are more kids.  1 out of 88 have autism.  1 out of 4000 have Fragile X.  I wonder about that though.  It's been a long time since the Fragile X numbers have been updated.  The autism numbers recently changed, and I wonder if Fragile X numbers should be updated as well.

So I read a lot about autism, almost every day.  Because my sons have autism too, and I can see it in them.  I read books and blogs and stories about people with autism and their parents in particular, and I can relate so intensely.  Just look at all the passages I flagged in Carly's Voice.  That book really spoke to me.

Daily, I read something a parent of a child with autism says or wrote and think to myself "Yes!  Me too!   It's like that with us, too!"

But we have Fragile X.  On top of autism.

And there's research galore into Fragile X, too.  We even participate in some of that research.  We are lucky.  We know what caused autism in our boys.  90% of people with children with autism still have no idea where it came from (I just made that statistic up.  I'm guessing.).  There are dozens of theories, but only a few concrete possibilities of the origin of autism in a person.  Fragile X is one of them.  It's the most common genetic cause, actually, as of today.  Scientists may one day discover another gene that causes autism more frequently than the FMR1 gene, but as of this writing, Fragile X is the most common genetic cause.

I'm forever reading about exciting breakthroughs and discoveries in autism studies, too.  I read them with mixed feelings.

For instance, recently there have been articles and postings about how some kids with autism can outgrow it - as they mature into adults, they no longer qualify for the autism diagnosis.  That's pretty amazing, huh?  I mean, those kids obviously don't have Fragile X.  I can't help but think that it would be nice to be able to imagine that Zack and AJ might outgrow their autism.

There are always stories in the news about autistic kids having the symptoms greatly reduced or eliminated completely by feeding them a gluten-casein-soy-dairy-wheat free diet.  Some Fragile X parents I know do this, and it has helped their child in one way or another.  It makes sense that if you eliminate the unnatural crap from your diet, you'll feel better and would probably behave better. (Definitely don't eat anything that lists "unnatural crap" as an ingredient.).  We've tried a couple of variations on diet restrictions - it didn't seem to change anything, at least not for the better.  It seems that Zack and AJ's troubles go deeper than that.  Besides, their intense issues with flavor and texture and appearance and familiarity of food made making changes to their diet almost impossible.

While I am the first admit that there's so much I don't know about biology and genetics, I'm just not sure how much diet changes can affect what is in our DNA.  Maybe I haven't given it a fair shake.  But I read stories about kids' autism reducing or disappearing completely after a diet change, and I think a little wistfully, oh, if only it were that simple for us.

AJ and Zack did ABA therapy for years and it did help them with their communication and impulse control, but it didn't get them to the point of attending mainstream elementary school without the assistance of a para or an aid, the way it does for so many kids with autism.  I listened as the ABA program director quoted fantastic statistics of dramatic improvement from this kind of therapy, and I knew it wouldn't be that way, for us.

All the therapy the boys have had - ABA, speech, occupational, everything - has been beneficial to them, but none of it has fixed the genetic problem.  Maybe that's why I focus my attention on the drug studies.

Sometimes I'm jealous of those with solely an autism diagnosis - because the window of possibility is still open.  Without a known genetic cause, they may be still in a land of unknown, but the possibilities are almost endless.  I don't know yet what might best help or even cure my boys of their Fragile X and autism, but I know what won't do it.

I know, I know, knowledge is power, and all that jazz.  It's just that sometimes Fragile X feels like a big barrier.  It's what keeps our autism from being simple.

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