Autism: The Invisible Diagnosis

This post has been rolling around in my mind for a couple of months now. I’ve been so close to writing about this several times, but I just didn’t feel quite ready to share my thoughts. I once heard Beth Moore say that the Lord often communicates to us in the secret place and He doesn’t want us to share those secrets until the appropriate time. I feel that exact way about what I’m going to share tonight. This “secret” between me and God wasn’t ready to be told. My feelings, fears, frustrations, hurts – none of those things were ready to be shared until I could take a little time to process them. I needed to listen to what the Lord was teaching me before I could share with others. I think I’m now ready to share this story, so here goes…

Our precious little Jonah was diagnosed with autism this week. We’ve been expecting this diagnosis for a few months now, so we’ve been able to sort of prepare our hearts and wrap our minds around what this will mean. But actually seeing it on paper was, well, devastating.

We have known for several months that something wasn’t quite normal with Jonah’s development. His language is characterized mostly by echolalic speech. What this means is that pretty much everything he says is something he is repeating from another source, whether it’s from television, a book, or something Peter or I have said. It’s almost like he has a Rolodex in his brain, and in each situation he flips through it to find a phrase or sentence that he has heard before. The amazing thing is that it almost always applies perfectly to the situation. I’m not sure how his little brain works, but to me it seems pretty miraculous that he can flip through all those mental files and come up with what he should say.  Other red flags for autism that we noticed were that he has significant difficulty transitioning from one activity to the next resulting in major breakdowns, he doesn’t exhibit eye contact, and he prefers to play alone rather than with other children. All of these factors kept pointing to autism in my mind, so I knew this diagnosis was coming. But it doesn’t make it any easier.

Peter and I had dreams for Jonah and some days we feel like those dreams have died. Almost like we are in mourning. I wrote about it in my journal:

“I need to look at this loss as a sacrifice of praise to God. We have to make a choice to trust Him even when we can’t understand why He requires some of the things He does. I just want Jonah to be normal. Why has God allowed him to struggle which then leads to the whole family struggling? I had dreams for Jonah. Do I have to let those dreams go? Is that supposed to be my ‘sacrifice of praise?’ But I know that God wants to see if we’re willing to give up what we love to Him who loves us more.”

Some days I feel like a normal mom with a normal life. Other days I feel extremely sad and riddled with anxiety. But over the past few months, I’ve noticed a couple constant themes at church, in my quiet time, in books I’m reading, in devotions I’m doing with Brienne. The first theme is that God loves us. I know that He is telling me, first and foremost, that He loves me. I have heard this over and over from Him during the past few months. The second thing He’s been telling me is that I don’t have to worry because He has a plan for me, for Jonah, for our family. This plan may not look like what we had pictured in our minds, but it is still His perfect plan for our little family. That doesn’t mean the journey will be easy, but it does mean that God will carry us through when we feel like we can’t get through another day.

I have experienced significant anxiety over Jonah, particularly this fall when he started preschool. I worried about so many things. Will his teachers be able to see him, not his behaviors? Will they love him through the difficulties? Will he be able to make friends? Will he even like school? And the Lord has been faithful to give us little glimmers of hope – a precious teacher who loves Jonah like one of her own and who prays for our family, Jonah learning to participate in circle times and group activities, the way he is learning to interact with other children. Small, almost insignificant things to those who don’t understand autism, but huge things to us.

We have also seen God’s faithfulness in other areas. He has given us glimpses of small improvements.  Again, these are things that would seem so insignificant to an outsider looking into our situation but they mean progress to us:
Jonah jumping in our bouncy castle which has caused major anxiety for him in the past;
Jonah telling me, “I hurt my toe.” This statement is significant on so many levels – he was able to indicate pain, which he generally doesn’t feel; he used appropriate pronouns (I and my), which is very difficult for him; and the statement was an original thought, not something he heard somewhere and then used in context.
Jonah leaning over to kiss Vivienne, without being prompted to do so. That moment was so special and heartwarming to me and it renewed my hope that maybe one day he will feel what it means to love someone.

Although this is not the road that we would have chosen for our family, Peter and I know that God is faithful. One morning as I was sitting in the playroom and having a particularly hard day, I looked over to a children’s bible laying on the floor. It was opened to the story of Jonah, and one sentence jumped out at me: “But God did not let Jonah drown.” No, God did not let Jonah drown in the raging waters 8000 years ago, and He is not going to let my Jonah drown in his autism. The Lord will faithfully walk beside Jonah, beside our family, through this storm. And we will give Him the glory through it all.