Take that, Autism Speaks

Here's my message for Autism Awareness Day 2018:

Autism Speaks, the 3rd largest source of Autism research funding, edited their lingo and updated their research policies this year. The new plan eliminated critical words, such as "crisis," "hardship," and "struggle".

Crisis: 1:36 children now have Autism. The word "crisis" is used in times of intense difficulty. I'm pretty sure this journey hasn't existed without a day of intensity.

Hardship: "severe suffering." When I look at my child, unable to walk up to a group of friends, have a complete meltdown when things don't go his way, practice his wording aloud before asking a peer a question, or battling anxiety and OCD that often drive behavior- I see my child suffering. Intensely.

Struggle: "a forceful effort to to free oneself from constriction." The conditions that co-exist with Autism, including ADD, OCD, ODD, anxiety- some have no language to express their feelings...I would give anything to help my son and all the patients I work with to be able to free themselves from the restricting, intense internal struggle they face daily.

The most upsetting part of their update includes eliminating any reference to curing Autism.

Every day I pray for a cure. I pray for recovery. I pray for self-guidance and patience. I pray for wisdom and for support.

Eliminating the word "cure" eliminates hope.

I know won't get back to 100%.

But realistically, how many of us function at 100%? This world today throws so many curveballs, distractions, packed calendars, incessant notifications, the endless to-do lists- we are thrown in so many different directions that it is impossible to be 100% invested at all times.

However, my devoted, hard working husband and I will not stop fighting everyday to get him to at least 80%.

Isn't that average?

So today, I won't be lighting it up blue. My light turned off when Autism Speaks took away my hope.

Our family, our friends, our community, strangers who "choose kind"- YOU are the ones who light up our lives and continue to push us to be the best version of ourselves.