I remember the day my son received his diagnosis clearer than I remember most days from last week. I had spent weeks researching various illnesses and disorders to help explain some of the issues we had been living with. The tantrums had reached a level that I couldn’t handle anymore, the back-tracking on speech and loss of communication were becoming more than a “phase”, and some of his physical behaviors just weren’t adding up. I researched hearing impairment, visual impairment, blood disorders, gluten and dairy allergies, and anything else that even hinted at being close. For a long time, I didn’t even consider looking at autism because I had this idea in my head of what autism was and what it looked like. There was an older child in the town we lived in with autism. He didn’t speak, he ran and screamed and made strange noises, spun and rocked, and displayed various other “stems” that are typical of a low functioning autistic child. I had the impression that that is what autism looks like, and that was my first mistake.
Autism doesn’t have a look. Autism isn’t one type. It comes in as many forms as there are children that have it. One thing that I struggled with the most, leading up to the decision to have him tested and for a considerable time following the appointment, was the fear of the ways it would change our life. Don’t get me wrong, autism does change your life in many ways. However, it’s very common for that fear to extend to our children as well. I had irrational flashes forward in life of him screeching, stemming ferociously, and all kinds of stereotypical ideas of what autism was. I was afraid a diagnosis would lead me down an emotional path of brain scans and being told something was severely wrong with my child. I was afraid of not being able to be everything he needed. I was afraid of everything. I was afraid he would just suddenly morph into this image of a mental illness that I had no idea how to handle practically overnight and I was afraid of the stress of trying to learn everything about it all.
What I wish someone would have told me is that he was Briar before the diagnosis, before we even considered testing for anything, and he would continue to be Briar after. I needed to be told that the little boy I had birthed, spent every day learning about, and would continue to watch grow one tiny moment at a time, would remain the same person no matter what diagnosis a doctor gave.
I want every mother to know that you don’t have to fear an autism diagnosis. The diagnosis doesn’t change your child, it only changes how you approach their struggles. Before, when he would scream and cry, I would scream and cry with him because I had no idea how to help him. I felt like I was drowning. However, now, I know to observe his surroundings, possible stimulation factors, his diet that day, and what kind of questions to ask the people he has been around. My stress doesn’t skyrocket with his anymore because I understand what is happening, and that gives me control over the situation and thus a way to fix it. Not only that, but I know a way to fix it in a way that won’t just delay the response but rather help him work through it and come out the other side a little more stable than he went into it.
It’s never easy to consider that your child may have some kind of disorder. There are a lot of phases of acceptance, too. Many of us don’t want to admit it but there’s often a small phase of romanticizing the idea of autism. I know, it sounds absurd and possibly insulting, but hear me out. Every mother wants the world for her child, and when faced with the idea that the world just might work against him his entire life, we sometimes have some mental backlash. With stories of Einstein and other amazing scientists, incredible mute artists, or kids that go from stemming violently to playing an instrument more beautifully than imaginable, it’s easy to slip into the dream that our children will join those ranks… and they might! However, there is no guarantee that every child with autism is a hidden genius or trapped artist, and holding onto that idea can be damaging to our relationships with them. We may hold so hard to the idea of taking their interests and their intense focus and turning them into something great that we forget to marvel at the little moments in their lives every day.
We have to remember that they are still just little kids, learning and exploring this world like everyone else. Sometimes it takes longer for connections to form, and other times they can make the connection so fast that it leaves us reeling. They can create incredible things and they walk through life on a different level than the rest of us, and often a level that swoops up to extreme highs before falling suddenly into intense lows, and, on rare lucky occasions, they level out next to us and we get to enjoy a short moment of genuine here-and-now connection. Those moments make everything in the lows worth it, and all the highs more enjoyable.
Your child always has been and always will be exactly who they are. Giving a name to their behavior doesn’t change who they are. But it certainly helps us, as mothers, fathers, siblings and other family members, better understand their perspective so that we can help them when they need it most.
Have an au-some day!