As the parent of a child with autism, I've gotten used to a lot of things. I'm used to the judgmental stares we get from strangers almost every time we go shopping. My daughter doesn't look unusual (autism doesn't change a child's appearance) so when shoppers see Skylynn having a hard time, getting overly excited or acting out of the norm, they think somehow she is misbehaving so they stare.
Often I am praising Skylynn, saying things like "you're doing so well," "I'm so proud of you," "thanks for being so calm." Because by our standards, she is doing well. Then the staring people think Skylynn is spoiled I'm used to that.
I'm used to missing gatherings with friends or family because the situation is just not autism friendly. I'm used to leaving the gatherings we do attend very early and without any notice because things have taken a sudden turn for the worst.
I'm used to the never-ending stream of appointments with doctors, therapist, and schools. And the never-ending tests that stab us in the heart; saying things like, "your child is far below her peers" and "she is still in the 1 percent for communication." This has all been my life for years now.
What I am not used to is the fact that my health insurance carrier won't cover my daughter's therapies because she has a medical diagnosis code of 299 autism spectrum disorder. It's funny that when this subject somehow comes up, people are always shocked that autism isn't a covered condition.
New research studies are frequently on the news showing that evidence-based treatments work for autism; they change lives. But still the fact remains: Many families in Utah don't have access to the therapies that will change their child's life.
Now here is something I am trying to get used to: people stepping up to make a difference people like Salt Lake County Mayor Ben McAdams. In McAdams' proposed budget he has included autism insurance coverage for Salt Lake County employees. Wow! He even proposed it in a balanced budget, with no tax increase talk about leading by example.
If approved by the Salt Lake County Council, this new insurance benefit would mean that the children of Salt Lake County employees would have access to the evidence-based therapies that will literally change their lives; they definitely aren't used to that.
These families would have to get used to a lot of other new things as well. Like staring with tears in their eyes the first time their child says "I love you." Or going to gatherings and staying the whole time because their child has learned new ways to interact with their environment. Families will have to get used to going to appointments and hearing "Wow, look at all this progress he's made."
These are some of the great things for families to start getting used to, and all because their employer took the initiative to make their lives better.
Utah is known to be a family-friendly state. And, in general, I agree. But, with 1 in 47 children in our state affected by autism, it's no longer enough to just be family-friendly. To really be family-friendly we must also be autism-friendly. Making Salt Lake County an autism-family-friendly workplace is a really big step.
I hope we all start getting used to big steps toward making Utah the autism family friendly state I know it can be.
Christine Passey is vice president of the Utah Autism Coalition.