Welcome to autism.

So we finally had Owen’s appointment with the developmental pediatrician to check into his speech delays. We’ve actually been a little concerned since about 18-24 months, but figured he was steadily progressing, so we weren’t THAT worried—and our pediatrician wasn’t super worried, either. But at his 36 month appointment, I finally just bit the bullet and asked the pediatrician for a referral to get Owen checked out—if for nothing else to just ease our minds (if nothing was wrong) or worst case, get started on an action plan (if something was wrong).

Well, we have good news and bad news. I always like the bad new first, so here goes:

The bad news? Owen was diagnosed with autism.
The good news? It’s a very mild form.

Even though I had a tiny inkling in the back of my head going into the appointment…it was still a shock to hear and my head was just spinning from everything the doctor was throwing at me (websites, studies, possible tests, results, terminology, insurance issues, second opinions, yada yada yada). So, really, even now a day later I don’t have a lot of details…

Some points, however (which I’ll probably still muddle, but you’ll get the gist):

The doc said Owen is very intelligent (the tests he took scored him in the normal/average to slightly above average on knowledge), he just has some language issues (things like pointing at what he wants vs. asking for what he wants in a sentence) and possibly even ADHD (how busy he is all the time and his ability to play/play without other interaction).

The doc wants to run a chromosome test (basically just for us to have the knowledge) but he doesn’t anticipate anything horrible since right now, Owen doesn’t fit the profile for any of the severe instances (where he would require more tests).

The official diagnosis is High Functioning Autism. I can (and will) schedule an appointment for a second opinion with a civilian doctor in town, even though I trust and have faith in the doctor we saw. I’ve already started the process to get him enrolled in the EFMP (Exceptional Family Member Program) on base, which qualifies us for additional assistance programs (such as in-home therapy, parenting programs, etc).

The Exceptional Family Member Program (EFMP) is a mandatory enrollment program for all active duty personnel with family members with special needs. The goal of EFMP is to assist military families in managing the dual demands of a Marine Corps career and the special needs of a family member. An exceptional family member includes a family member enrolled in DEERS and MCTFS who possesses a diagnosed physical, intellectual or emotional need that requires specialized medical or educational services. Enrollment in the EFMP program is designed to assist the sponsor with assignment to a duty station where appropriate services necessary to support the family member(s) are available. Installation EFMP Specialists are available to assist sponsors and their family members with the enrollment process, resource, referral, and support before, during and after Permanent Change of Station transitions. Specialists also serve as advocates for EFMP families to ensure access to vital medical, educational and community services. For more information about the EFMP program please contact your installation office.

I’ll have to visit the local elementary school to get him evaluated for an IEP…which, fingers crossed, will allow him to attend preschool there (five minutes from our house). I need to start researching therapists because there’s a waiting list. And I’m sure about a thousand other things I’m forgetting or haven’t thought of/learned yet.

The good thing, however, is that the pediatrician said I’m doing everything right with him (just from watching us interact during the appointment)—so that’s positive at least—and I can just keep keeping on at home.

I have shared the diagnosis with my family and friends and they have all been amazingly supportive. In fact, the comments two friends made really stand out and I want to share them here, so I will remember them forever (and maybe someday I can read them without crying like an emotional pregnant woman):

  • Aaron: Here’s the thing to remember—a diagnosis doesn’t change who Owen is. All it does is attach a label to a collection of his behaviors so that you can get the appropriate assistance to help him continue to develop. He’s still the same child that you’ve been playing with and taking pictures of and sharing stories about that he’s always been.
  • David: That just means he’s even more special!

So, this is sure to be an interesting, frustrating, and eventually rewarding journey… Stay tuned!

One Reply to “Welcome to autism.”

  1. Jen,

    You know my son, Kyle, has the diagnosis HFA/Asperger’s. He has sensory issues. He is also incredibly smart. I recommend reading the O.A.S.I.S. book on autism. You can get it at amazon. I can get you links when I’m on my computer and not my phone. I’ll pm you my number. Feel free to call me to talk whenever needed.

Leave a Reply