The Diagnosis

I wish somebody would have told us. I wish somewhere along the way that anyone who saw the signs would be brave enough to let us know. I tell myself that if someone had stepped in, that we wouldn’t be dealing with the issues we’ve been dealing with since our oldest was in fourth grade. But I can’t say that. I can’t place them blame on anyone. That’s not fair.

When she was around nine-years old, we did have a couple of people who showed concern (a theater teacher and a choir director), but we just chalked it up to our child being a little unique and who did things her own way. She was our first child. We didn't know any differently. She was super smart, funny, and amazing. There was nothing wrong, and if anyone had ever said anything, we probably would’ve blown them off.

I’ve been asking myself this question for a while now: Would we have a listened if someone had had a serious conversation with us about our beloved oldest child? If they were genuinely concerned and loved our child, wouldn't we at least hear them out?

The answer to that question is I don't know. I’d like to say we would, but it probably would’ve taken us a while to let it sink in. We may have been upset because our beautiful, intelligent child was perfect and nothing could be wrong. I look back and think of everything we missed. It's not anyone's fault, and I'm not pointing fingers. I just wish we could've figured out what was going on with our child sooner. It would have made her life a whole lot better had we gotten her help earlier.

And here we are. Sixteen-and-a-half years after she graced us with her presence, and we have a diagnosis for high-functioning autism (formerly known as Asperger’s).

Autism.

I still have to let the diagnosis sink in. I hold back tears when I think about it, but not because I’m sad. Because we now know.

Now that I look back, the signs were there all along. The meltdowns (I just called them red-headed fits), the obsessions (I thought every kid obsessed over being Ariel, the mermaid, for five years), the difficulty processing verbal information (I just thought she didn't care, needed a hearing test, or didn't want to listen), the one-track mind (don't all kids bug their parents over and over again for something they want or have to have?), and the list could go on. And as she became a teenager, those child-like characteristics weren't going away and her peers seemed to leave her behind. Her friend circle got smaller. Birthday invitations stopped. Sitting alone in her church youth group was the norm.

By the time she got to middle school, we knew something was going on, but we thought we could take care of it ourselves. Her frustration grew. School work became more demanding. Her anxiety worsened. Escapism into Doctor Who, Anime, drawing, and most of all, her phone, became commonplace. Come to find out, autism (or any other special need), isn't just something you can take care of by yourself. We sought help and got an ADHD diagnosis and thought we were free and clear of the issues she was having. Or so we thought.

Fast forward to high school. The rigorous academic expectations at her school became overwhelming and demanding, which spurred on her anxiety even more. Anxiety turned into depression. Depression slowly (and suddenly) morphed into her shutting down. Our once animated, precocious, social, happy-go-lucky child was gone.

We got immediate counseling, anti-depressants, and a plan. Her improvements were amazing but not without daily struggles. Food, wine, and more wine became the way I dealt with the challenges. I have gained 25 pounds in the last two-and-a-half years. I feel like I’ve been treading water, living one day at a time. David has lost his hair (well, he already had that issue, but you get the picture). When a child struggles, the whole family is embroiled in that struggle, as well. I'm sure her two sisters have stories of the family battles.

But today, things are looking up. Two days ago we got the diagnosis. Two days ago we were finally able to breathe. We are now developing a plan, and our girl is doing great, learning about her diagnosis. A few months ago, through a tear-stained face, she said she wanted to know what was going on. She was confused and defeated, thinking she was less than intelligent. Pair those feelings with immense social anxiety, and high school was a tough place to be.

Through testing with a psychologist and a neurologist, we officially know our daughter is super intelligent, but has a special brain. She's not neurotypical, but who is? She smiled from ear to ear when I told her some of her IQ scores, relieved to know she wasn’t stupid. I saw the weight of years of struggle lifted right off her shoulders. There’s nothing wrong with her; we just have a new normal.


And like most autistic young adults, she has her amazing gifts. She can draw well and write amazing stories, but most of all, she can sing like a bird. She’s already gotten to sing at Carnegie Hall in NYC and has been able to sing with a prestigious Austin children’s choir, Conspirare, since she was nine. Her voice is truly a gift from God that we brag about often (sorry everyone who has to hear about it over and over again).





My girl has so much ahead of her, and with our new knowledge and path, the possibilities are endless. She’s just going to have to work harder to get there, and I think we are all prepared and ready to face the future full force.