Autism Awareness or Action?

April Again!

I confess that I have mixed feelings about the month of April. It's autism awareness month, and my social media feed is full of helpful tidbits, heart tugging stories, statistics, challenges, parent rants and explorations about what the future will hold for our kids. A common comment among parents is the more cynical "It's been autism awareness month since the diagnosis." Some parents are encouraging a reframing, from awareness to action, but with the myriad of thoughts on all there is to be aware of, the route to action is unclear.

Heart Issues

As a parent, I restrain my own annoyance and frustration when someone points out that they are standing in solidarity with a photo on Facebook or an encouragement to light it up blue or a special autism awareness t-shirt. I know this is my own issue. My heart has areas that the Holy Spirit's gentle voice has yet to penetrate with His enduring patience and love. It's been difficult to hold the tension between people are offering support in ways that they understand and the myriad of parents that I know who are hurting, simply exhausted, emotionally crushed and on the verge of mental break-down from the daily grind of caring for a loved one with a developmental disability.

Don't get me wrong. When I'm with other parents, I share my own mix of deep empathy of the moment's pain with the hint of a silver lining, written in God'a hand. And I think I can offer that without getting the proverbial eye and head roll because I really understand the pain, and the parents know I understand it. I find that I'm resistant to pats on the back and 'I don't know how you do it' from people who really don't know... who can't yet know because they haven't joined my life for even 30 consecutive minutes. Again, I note my impatience and acknowledge the challenge in my heart, the places that I crave the transformative power of God's love to fill my cracks.

So this month, I get to yield to God's working in my heart and accept the love others give, as they grow in awareness of autism and what it means to families like mine. Still, I want to weigh in on the challenge of awareness in our faith communities and what it would mean to me.

I have a dream...

I have a dream that our faith communities will be places that are truly inclusive. I don't (yet) need to be able to bring my son to church. That is for a future dream. Today, I dream about being really understood:

  • my daily crisis of faith as the Invisible God seems very invisible, mixed with sacred moments filled with gigantic miracles in very small packages
  • my ragged emotional resources, swings from anger through depression to foolish giggles and the occasional insane laughter
  • the exhaustion down to my very bones

1 in 68 children have autism, with 1 in 6 children dealing with a developmental or learning disability. So, 1 in 6 families that walk through the doors of our churches live this daily reality. Awareness means being prepared for that. What does awareness mean for families dealing with autism, ADD, sensory processing disorder, learning disabilities, Down syndrome, ... ? What's the equivalent of the proverbial wheelchair ramp?

4 Ideas

Here's what a wheelchair ramp with look like for me.

  1. Slow Friendship - The slow movement is in contrast to the quick and easy. Not fast food, slow food. I want slow friendships, connections that go beyond the superficial with people who I can trust with the chaos of my daily life. I don't want to hide. These connections take time to build. They are inconvenient for all concerned. The rhythm of my life is erratic. Yet, my heart craves these relationships.
  2. Deep Listening - Many of our churches invite people to ask for prayer when they have needs, and to share testimonies of God's answers. This is wonderful and is an amazing source of encouragement. But what happens when you have asked for prayer, and given updates, and weeks, and months and years go by? My struggle with faith sometimes means I stop asking for prayer. That doesn't mean I stop wanting prayer, but I get tired of saying the same thing. Yes, we still struggle with potty training, Yes, anxiety is still an issue. Yes, he still wakes up in the nights and so do I. I dream of a faith community that hears what I'm saying and what I'm not saying, and that pursues me in my silences.
  3. Inconvenient Service - There's nothing convenient about the 24/7 care and support needed by our loved ones with various challenges. God initiated parent into this inconvenience with the night wakings to feed and change a crying baby. Families learn to just respond to the need. But I don't think we were ever meant to be solely responsible for our own needs (Acts 2:44-47; 4:32-35). Being responsive to the needs of families like mine means being willing to live a bit of the inconvenient life that I live. The Good Samaritan (Luke 10:30-37) was on his way to doing something important . Then he encountered the almost dead man on the road. Helping him was definitely not convenient.
  4. Radical Support Systems -  I think most of our churches want to offer these supports. We may preach about the need for it, and this month of April is a great month for such preaching. But, as Dr Henry Cloud said at a conference a few years ago, when character fails, implement a structure. In other words, the things that aren't happening organically need a mechanism to make them happen. What kinds of support structures can we create that offers Slow Friendship,  Deep Listening and Inconvenient Service, while helping our families meet Jesus in the ways He wants to meet them and bring resurrection into some dark, hurting places?

By the way, this isn't just for our families caring for kids with developmental challenges...

The opportunity is here, the mission field is ripe. Hearts are there to be held and massaged with love by His hands at the end of our arms. I'm praying that your arms are filled with His strength to massage the heart of your loved on, or the heart of a parent or family member offering perpetual care to a loved one.