Monday, April 16, 2012

The Big "A" Word

Most of the people who read the title of this blog post will assume I'm referring to a cuss word. I assure you I'm not; however, I'd be willing to bet that for some parents who encounter the big "A" word, it might as well be one.

Autism. It's one of those words parents fear the most. Parents of children with autism often see the signs early on, but it still may come as a shock when their child is officially diagnosed. My husband and I started questioning our son's behaviors as early as 15 months, but we were still quite overwhelmed when we got the official diagnosis a little more than 2 years later. While Mason doesn't have classic autism, he is still on the spectrum. His official diagnosis is PDD-NOS, or Pervasive Developmental Disorder - Not Otherwise Specified.

We knew that Mason would most likely face obstacles due to his extreme prematurity and subsequent grade IV brain bleed, but we never considered autism until we started seeing some early signs. I even questioned his pediatrician at his 12-month well baby check (which was delayed a few months due to a military move) but she brushed off my concerns even after she admitted some of his behaviors were early indicators of autism. We remained vigilant though and got Mason into the school district's Early Intervention Program as well as medically based OT and Speech (he had been receiving medically based PT since coming home from the NICU). Although the Speech therapist saw the signs right away, it took the school personnel about 6 months to identify enough behaviors to be considered red flags. After we switched pediatricians, we were able to get a referral for the Autism Spectrum Disorders clinic and subsequently a
formal diagnosis.

Most people who encounter Mason say that they wouldn't know he was on the spectrum if we didn't tell them. These people typically only spend a few minutes with our son though. While he is not severely affected, he is still, in fact, autistic. That's why it's called an autism spectrum disorder. Children can fall anywhere within the spectrum. Just because a child is at the higher end of the spectrum, it doesn't make them any less autistic. Also, autism isn't something that can be outgrown. Our son will have to overcome obstacles for the rest of his life.

Mason's development has been all over the map since birth which was no surprise but, in addition to that, he struggles with communication and socialization. He doesn't know how to express his needs or wants and the majority of his speech consists of quoting phrases he's heard or whole scenes from television shows or movies. My husband and I have always had a hard time playing with Mason because he doesn't play like a typical developing child. He's also had a hard time connecting with peers. He's made a great deal of progress since starting ABA therapy but there's still a long road ahead.

We love our son unconditionally and wouldn't change him for the world, but that doesn't mean our hearts don't break for him on a daily basis. We want so much more for him!! It's hard sometimes to contemplate the future because we have no idea what's in store. We are cautiously optimistic that because we sought early intervention, someday Mason will be able to lead a "normal" life but there are no guarantees.

Autism has robbed Mason of so many experiences and it will most likely continue to do so; however, it has also taught my husband and I a great deal about ourselves and the world. We are going to continue to advocate for our son as well as others in the autistic community. Unfortunately, many people have misconceptions of what autism looks like and they make assumptions due to those misconceptions. I can only hope that by sharing our story, I can help spread awareness of this disorder.

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