We finally received the diagnosis from CADD (Center for Autism and Developmental Disabilities) for my son. I wasn’t surprised. In my heart I already knew they would confirm the Autism. His first Autism diagnosis came from a generalized psychiatrist, but it was now confirmed by several specialists who’ve seen my son over the span of a few months.

It felt more real now. Amidst the array of emotions, I felt validated. Immediately I sat down in front of my laptop and allowed my heart to spill across the screen. Words just poured out of me. Immediately, I felt a blog forming in my head.

I was determined to call out those who’ve judged our situation without having all the details. To those who’ve made their conclusions based on the little time they’ve spent with him. To those who have their own diagnosis for our son—perhaps disobediencitis or maybe lackofparentingosis.

But I stopped myself. My wanting to write about everyone’s judgments about our family makes it about me and my justifying myself. Instead, I want to glorify God—who deserves all glory and praise. And so, I will change the blog’s tune and write a little about Autism itself.

There isn’t much in Google search that explains autism. Oh sure, it gives possible characteristics that might be true across the spectrum. But it doesn’t describe what it actually looks like in an actual behavior. It doesn’t explain why their “bad” behavior is not actually bad but simply the result of a skill or communication deficit or a sensory overload.

Autism is so misunderstood. We bank a lot on the portrayal of an autistic man in the movie Rain Man. However, how accurate is it? Why do I know it’s hugely misunderstood? Because I have been on the other side of it. Innocently ignorant. Unless it’s obvious to us (primarily those on the low-functioning end of the spectrum) or fits into our stereotype of it, we refuse to believe there is any autism. If their behavior does not fit into our very limited knowledge of autism, then it simply cannot be autism. And we’ll tell people that! (I personally have been told this!) Our closemindedness refuses to believe there can be any possible reason for a bad behavior except for disobedience. And there can be no treatment for said behavior except for punishment. We are ignorant.

If we want to learn more about autism then spend time with the person and family who is struggling. Please, don’t shun them simply because you don’t understand. The best way to lose the judgments and misunderstandings is to ask questions, learn, care, support. (This doesn’t only apply to autism but runs across the board.)

We tried traditional methods of discipline in which my husband and I were raised, but it was a disaster. Not only was he in a full-blown, all-day-long meltdown, but his physical altercations with his brothers also increased drastically.

This was not the answer.

I was advised to call Focus on the Family’s crisis hotline. After briefly explaining our family situation, his advice was to only discipline if the root of the negative behavior was sin. If the motive was not sin, then teach him a different way to handle the situation. (This was before any diagnosis.)

This advice from the crisis counselor began to change everything! Before, I had a hard time seeing his negative behavior as anything but sinfulness. I began to pick apart and assess my son’s interactions and it really opened my eyes. It almost seemed there was a disconnect with him. These autistic kiddos don’t know any other way, so they resort to what comes naturally to them (sin); something that we all struggle with but develop skills to know what behavior is acceptable. The skills babies learn as they grow and develop—the ones we take for granted later in life—these kiddos lack and must be taught.

This incident explains that what you observe may not be what’s truly going on:

A grandparent and I were talking on the sidewalk when my son’s van pulled up. Immediately, my son asked if his support staff was coming that day. We had discussed before that she wasn’t, but he asked anyway. I turned to the grandmother, explaining that the support staff had started a new job, when my son ran out to the busy, main road. On the surface, it’s easy to see the sinful behavior: he was doing something he shouldn’t be doing. But with these kiddos you must look at the antecedent leading up to their choice (and also their lack of safety awareness). My son was disappointed and missing the support staff (whom he loved) but instead of verbally expressing his sadness and seeking my comfort, he sought my attention in an inappropriate and unsafe way. This is a great example of needing to be taught how to appropriately and effectively communicate his needs instead of acting out to get the help.

My son’s Behavioral Consultant told us when a behavior is seen to assume first it’s a skill or communication deficiency. If it’s not that then handle it accordingly. If he has the skill to obey then expect obedience. If he lacks the skill to obey teach him the skill first so he can obey.

You can’t expect him to be where he needs to be developmentally, but to accept where he is now and go from there. Behaviors and all. It’s unfair and unsafe to expect a child to drive a car without first acquiring the skills (safety awareness, etc) and the time and instruction from an experienced driver.

The goal is to teach him how to recognize and catch himself before he gets to the point of a behavior. To have positive ways to cope with the struggle before he hurts others or makes a bad choice. To teach him how to express himself in an appropriate, kind or safe way.

It has been quite a journey for our family. This sweet child has been a challenge from day 1. No one has any idea the path we’ve walked. The concerns we’ve had. The pressure we’ve felt from others. The uncertainty and doubt we’ve felt. We were so directionless, powerless and without any answers. We felt misunderstood. We felt like black sheep. We felt alone. In my heart I knew there was something “off” with him but others’ opinions—though perhaps well-meaning—made me distrust my momma-heart. It made me second-guess everything that was tried. And it made us want to withdrawal from everyone even more.

But, ultimately, God knew. God was working through it all. He knew where he needed to be. He provided a very-dear few who stood by us (thank you to them, from the bottom of my heart!). And He introduced us to others along the way who He would use to guide us to the path we were meant to take.

Today, I feel peace. I feel like I’m not crazy after all.

Through this journey, I have begun to develop thicker skin and, also, to be less judgmental. To lean on God and His perfect timing for us. To remember Whose opinion matters above all the rest. I am learning to pick my battles with my son. Sometimes it’s okay for him not to conform to “normalcy” but to be who God made him to be. While other times gently and lovingly guiding him in this world he doesn’t quite understand. To be more patient and understanding. After all, he’s doing the best he knows how.

This diagnosis has provided a door into his brain and heart, but we’re just beginning to enter in. Give us time. Give him time. It’s going to take him longer than a typical boy as we help him work through his challenges.

I pray this blog brings awareness, or perhaps encouragement to another family who is struggling. (I am always available if someone wants to share their story or ask any questions. See the contact form.)

The [Autism] diagnosis is not a label. It’s not a negative stereotype to make them “different”. It is a tool to be able to get them the help that they need to make them the best version of themselves. (From an unknown doctor)