Friday, April 1, 2016

Autism and the Church: What I Want You to Know

The church that our family attends publishes a monthly outreach magazine, New Covenant, and they invited me to write a piece for Autism Awareness Day on what I would like the church to know about autism. Below is the article that will be in the April edition.

If you'd like to show your support for Autism Awareness day, start by reading the article and consider one of the steps listed at the end. Additionally, you could wear blue tomorrow, April 2, take a picture of yourself and post it on social media with the hashtag #TheStoryofJamesandLiam.


April 2 is World Autism Awareness Day. Recognized by the UN, this day has been officially designated to bring awareness to autism and was established less than ten years ago. According to the most recent statistic released by the CDC, 1 in 68 children have been diagnosed with autism spectrum disorder, which is approximately 1% of the general population.

Autism is a neurological disorder that requires an individual to meet two main criteria: deficits in social communication and interaction and restricted or repetitive interests or behaviors. There is an incredible amount of misunderstanding, misinformation, and miscommunication that surrounds autism. So let me start by addressing a few things I, as the mother of two children on the spectrum, frequently hear.
·      Autism does not affect a person’s intelligence. In fact, the restricted interests that are a hallmark of autism sometimes allow a person with autism to develop an expertise in their area of interest.
·      People with autism look normal. There are no physical markers of autism.
·      Autism is a spectrum. Think of it like a sphere, for every axis of autistic-like behavior, a person could range from mild to severe with very little influence on the ways the other symptoms present.
·      Autism diagnoses are not flippant. Usually a team of specialists evaluates a child and uses a standardized and thorough diagnostic tool to arrive at their conclusions. The parents have most likely wrestled with a range of emotions that extends from grief and anger to relief and guilt. Please don’t take their disclosure lightly.

My husband and I have three children:  James is 6, Liam is 4, and Annia is 1. James was diagnosed with autism just before his fourth birthday and Liam was later diagnosed with autism just before his third birthday.

Autism for our family means big, squishing hugs. Wrestling in the living room. Star Wars trivia. So many school meetings. Endless paperwork. At least a dozen copies of the Handbook of Parental Rights from the public school. Worry. Release. So much joy. So much laughter. Public meltdowns. Avoiding birthday parties. Ultra-literal conversations. Teaching play skills to the boys. Teaching adult friends about autism. Rocking sobs and confusion. Walking the line of advocating for my children and giving teachers grace, recognizing that I am my children’s voice but that they are people, too, who are overworked and underpaid.

Above all, if there is one thing we want you to know about our kids it is this:

They bear the image of God and are loved fiercely by their heavenly Father.

This journey as the parents of kids with autism is amazing and exhausting. Sometimes it is lonely. Sometimes when we share about what our lives are like people respond by saying that they could never do what we do. I’ll be honest with you, lots of times this feels like people just don’t want anything to do with our brand of crazy. Hands up, walk away.

In Mark 1:40-42, Jesus heals a man with leprosy. Leprosy was a contagious skin disease that was considered religiously unclean. Touching a person with leprosy contaminated you according to religious law, which added social pressure to distance yourself from the problems of a person with this disease. Hands up, walk away.

In some circles a quirky person who doesn’t read social situations well, who blurts out with off-topic comments about their favorite subjects is considered socially unclean. Hands up, walk away.

But Jesus isn’t like the religious elite.  He didn’t recoil at the sight of this man who came to him to be healed. He didn’t walk away. For Jesus, the narrative was different. He moved toward this man with gut-wrenching compassion and he reached out to touch the leper. Hand out, pressing in.

Jesus could’ve healed this man and refrained from touching him in order to remain ceremonially clean. No one would’ve blamed him for that. In fact, people would probably still have been surprised if he had been willing to do that. But that’s not the example he left us with. It wasn’t enough to heal this man’s physical need; he also treated him like a person, restoring his dignity.

So if you’re wondering what to do, how to care for a family who is navigating autism, follow the example of Jesus:
1)   Pray about whether there are physical needs the family is facing that you can help with. Many children with autism struggle to toilet train and need diapers for well beyond a typical child. Many parents desperately need respite and have few people they trust to watch their children. Some families are overwhelmed by the practical and financial needs of multiple weekly therapies.
2)   Press in. Know that children with autism grow up to be adults with autism and that people with autism want to make friends they just are not sure how.  As these children age they will be in youth groups with your children and possibly adults in your small groups. Educate yourselves and your children on autism and make space in your groups and your hearts for people on the spectrum who may need a little more grace in social situations than you’re used to.
3)   Pray for peace. Pray that the parent and child will find some form of effective communication. Pray that the parents would have wisdom and the child will know and trust their parents’ love. Pray for unity between mom and dad.
4)   If you’re still unsure, ask the family, “How can I help support you? How can I pray for your family?”

When Jesus says, “Go into all the world to make disciples,” note that he said “all” the world; he didn’t offer exceptions for people with disabilities or the places you might be uncomfortable. Press in. Make disciples of those who have autism. Make disciples of their families. Most likely, these families are aching for your presence. Press in.

1 comment:

  1. Thank you for sharing. I am new to the process as my son was recently diagnosed. Thank you for sharing your wisdom and story.