What's in a Label?

Labels are something most people run from.  People don't want to have a label slapped on them or their kids for fear of what others will think.  The stigma of a label is a whole blog post of it's own.  We personally know numerous families who know their child is different and struggles with certain things, but won't have testing done because they don't want their child labeled.  And I want to be clear I have no judgements on that.  Every family is different.  But there comes a time when hiding from a label doesn't work any more.  When there's something bigger going on that threatens your child's future, their happiness and wellbeing, you act.

Early on we knew something wasn't right. We didn't know what was wrong and reached out for help. We were told a lot of things at the beginning; "he'll grow out of this," "head banging is normal in children," "we know he's not autistic because he makes eye contact," "you just need to learn how to talk to him," or "he just needs more discipline." None of this advice eased our concern and it didn't help us in anyway.  All of those statements were ludicrous in our situation. We ended up spinning our wheels for a couple of years before we found the right help.

We were finally introduced to people who took the time to listen to our concerns, observe Charlie (for over a year before they started testing for autism), and offered tools that actually worked.  When they presented the idea of autism testing, there was a lot of discussion between Tyler and I and the provider, yet no hesitation on our part.  There was no hesitation because by this time, if we're honest, we suspected autism and we still had not tapped into all of the right resources that could help Charlie.  We understood that a lot of therapies, counselors and tools are not available if there is no diagnosis of some sort.  Now, I want to be crystal clear.....we did not go searching for a diagnosis just to open more doors.  We agreed to testing to confirm what we already knew and to open doors that would benefit Charlie and our family.  Charlie was diagnosed with autism when he was 4 years old, yet the symptoms had already been there for a long time.

We wouldn't change a thing along our journey.  These last few years he has come so far in his therapies.  He's tolerating a lot more, he's calmer for the most part, has less meltdowns, he has more coping skills that he has started using on his own without prompting, and he's slowly starting to be able to identify emotions, both with himself and with others.  Do we still have more to work on?  Absolutely!  But we're so proud of where he's at.  For us, without a diagnosis, we wouldn't be where we are today.  This week, Tyler and I were talking to Sunny's dog trainer, we hadn't seen him in over a year and before he left he commented, "everything seems much calmer here. You guys don't look as stressed."  And he's right.  Sure, there's still times of stress, there's still meltdowns and some sleepless nights, there's awkward social interactions that need correcting and constant hand over hand teaching of the most basic skills....but things are calmer.

For us, having a formal diagnosis on the record was the right thing to do.  We needed the extra help, because, honestly, we were drowning. To us, autism isn't a "label."  Autism is part of our daily life.  Autism is the differences we recognized in our son and the driving force that enabled us to get him the tools he needs to be successful in life.  It's nothing to be feared.  He is our son and nothing will change our love for him. Nothing.  Not a diagnosis, not a so-called label.