A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts published in September, 2010

I’ve realized that I’ve been posting about issues concerning the identification and treatment of autism and very little about my own 10 year old twin autistic boys, Michael & Sean.

Both boys are now in middle school (how’s that for a frightening thought!).  They’re doing pretty well, but I can’t say I ever see them living independent lives.

Tomorrow, Susan and I will be meeting with an attorney about setting up a trust fund for the boys.  If you haven’t begun those types of discussions for your own autistic children, I recommend you do so shortly.  They’ll help guide you past all the legal and accounting hurdles you’ll need to jump in order to leave your children with as much money as possible.   It’s going to cost about five grand to set up trust funds for both boys, so the price of entry is another thing you need to be prepared for.

We still haven’t managed to get the boys to sleep through the night on their own, so that’s challenging in it’s own right.  And Susan and I haven’t spent a night apart from the boys (together) in over three years now.  It’s hard to find baby sitters or family for that kind of overnight duty.

I’m dreading puberty as that will introduce a whole new set of challenges.

But having said all that, I’ve come to terms with the boys’ autism.  It’s only taken me 10 years to make that statement.  They are who they are and while their brains are wired different, they are distinctly unique young men.

Now if only Michael will stop throwing his MP3 player into the neighbor’s pool and Sean would stop blowing bubbles on our new carpet, I would be a happy camper.  But for now, I will go with the flow, and in our case, that flow includes life with autism.

A recent paper indicates that boys are more at risk than girls owing to the fact that “males who carry specific genetic alterations on their X-chromosome have an elevated risk for developing autism spectrum disorder, or ASD.”

It goes on to say…

Boys inherit one X-chromosome from their mother and one Y-chromosome from their father, explained Scherer. “If a boy’s X-chromosome is missing the PTCHD1 gene or other nearby DNA sequences, they will be at high risk of developing ASD or intellectual disability.

“Girls are different in that, even if they are missing one PTCHD1 gene, by nature they always carry a second X-chromosome, shielding them from ASD. While these women are protected, autism could appear in future generations of boys in their families.”

If the title didn’t work, perhaps the visual might have helped produce a yawn, but if you were autistic, it’s likely that nothing would work.  That’s because you would have to actually be watching someone’s face or be interested in what they were doing.   Although the rest of us might replicate a yawn, in fact couldn’t help ourselves from yawning right back at someone, such empathy simply doesn’t happen when you’re autistic.

“The iPad wasn’t designed with autistic children in mind, but, anecdotally, the results are seemingly miraculous,” say’s well known technology bloggers (and Apple Critic) John Gruber.
There appear to be more and more cool apps being designed for our kids and it appears that the iPad (or tablets in general) are the preferred device.
Check them out for yourself:

Among Leo’s favorites are:

First Words

Shape Builder

i Write Words

Tappy Tunes

Stories 2 Learn

Others can be found HERE and HERE.

The interesting part about being able to identify autism at a very early stage (3 months or younger) is the real possibility that the child could begin treatment to shift its hard wiring and initial apathy for social clues as soon as possible.   That might be the future of potential treatments.