Autism: 1 in 88…My Son: 1 in 1,000,000

Present word count of WIP:  49,832

1 in 88. That’s a much higher percentage than it was back in 1996, when I first suspected something was off about my son…or even in 2000 when he was a first grader and I got the official diagnosis. And in some places, like Utah, the rate is even higher (1 in 47).

Whether it’s an epidemic or not, it’s certainly a direct concern to over a million families here in the U.S. and many more around the world. Then multiply that million by at least ten for all the families indirectly concerned (relatives, teachers, health care professionals, scientists, taxpayers) and you might begin to understand why autism is a topic that won’t go away. There is a very good reason we devote an entire month – April – to  Autism Awareness.

But I don’t intend to cite figures and percentages here. I’m all about stories. So, for my postings during this month, I thought I’d share my son’s story. After all, he is the reason I wrote my second novel – the one that will be published later this year.  I’m not sure yet of the title. That may be determined today when I meet with Linda to sign the publishing contract. But whatever it’s called, it will be, at its core, Jason’s story. There are bits and pieces of him throughout, either in detail or symbolism.

I’m traveling right now, so my earliest recordings of our Asperger’s journey with him are inaccessible. However, let me share a glimpse of the kind of challenge we still face now that he is 18.

While no two children with an Autistic Spectrum Disorder (ASD) are alike, traveling with them is ALWAYS hard. Why? Because travel is all about change: changing location, changing the daily routine, changing the people you’re around, changing the places you eat and sleep, etc. And any change is most difficult for these individuals. They tend to want to cling to the familiar…even more so than the rest of us do.

We came down to Utah to attend our church’s General Conference, see our daughter, and sign my contract. Jason was reluctant, particularly since he was still getting over a chest cold, but he agreed since this might be our last opportunity to attend conference as a family for at least a few years. Besides, he had a particular question he was hoping to have answered during conference.

So, we packed up the grill, his preferred plate, fork, glass, and everything else I’d need to make his special grilled cheese sandwiches. He brought his pillow (to be honest, I wish I’d brought mine, as well) and three of his favorite books, his iPod Touch, etc. And once we got here and settled into our hotel, we tried to restore as much of his routine as possible.

He went to the Priesthood Session with his father, coughing through much of it. Later that night, my husband and I worried over how he might react should his particular question not be answered over the pulpit by one of the leaders or General Authorities. After all, he had been promised by church leaders that if you prayed faithfully to receive a particular answer during conference, you would get it. And those with Asperger’s take such things very literally. But by then, we knew what his question was and it was so particular that we both shook our heads in doubt. You see, the likelihood of his prayer being answered in that way wasn’t anything like 1 in 88. It was more like 1 in 1,000,000. Still, we’ve all known miracles to happen.

I’m sure, by now, you’re dying to know his question. Like others with Asperger’s (a high functioning type of ASD), Jason has his obsessive interests. For him, it’s media – particularly movies and books. He loves all things Disney and he loves the Harry Potter series (both movies and books). So, when he finally shared his question, we learned it was this:

Once and for all, are Disney and Harry Potter looked upon with approval by the Church?

I remember the way he perked up when President Uchtdorf began his talk Sunday morning by saying he’d felt moved to respond to the concerns of a mother about her two children. Surely, he must have thought, this will be my answer. Then, as the talk proceeded to focus on the dangers of contention and holding onto grievances, my son sagged back in his chair. Still no answer.

After the Sunday morning session, we had a talk about conference talks. We explained that while  some may provide very specific answers, they usually deal with general principles of the gospel. I told him that his best answer probably came Saturday morning when the prophet, himself, reiterated that we should seek for those things “that are virtuous, lovely, or of good report, or praiseworthy.” We told him that, guided by the Holy Ghost, he needed to determine for himself whether Disney movies and the Harry Potter series was of good report, praiseworthy, and uplifting.

Apparently, he made that decision. As we sat in the Conference Center waiting for the afternoon session to start, he pulled out my Kindle and began reading “Harry Potter and the Sorcerer’s Stone.”

Talk about juxtaposing the sacred and the secular. Nevertheless, it calmed him and he hardly coughed at all during the whole session.

On Friday, I’ll post about how this Asperger’s journey began.

 

Originally posted 2012-04-02 06:00:56.