On Waiting For The Official Autism Diagnosis

by Shannon Greenstein
Cengizhan Konus / Unsplash

My son, who is perfect, thank you for noticing, is the sweetest, smartest, most beautiful ball of delight I have ever encountered. He’s been mine for 22 whole months (though I do share him with my husband who technically can take credit for exactly half of the toddler), and motherhood is everything I hoped it would be and nothing like what I feared. I am blissfully happy.

However, this ball of delight is also causing me more angst than I’ve ever experienced in my life. The GREs, recovery from an eating disorder, and working two jobs do not compare to the stress and worry that imbue most of my thoughts these days.

It’s not my son’s fault, of course. He does not a single thing wrong. However, and this is the first time I’m voicing this in a public sphere, we fear he’s on the autism spectrum. And I’m not quite sure how to process that.

Now, I’m fully aware that a child cannot be diagnosed as being on the spectrum until he or she is at least 2 years old. Our developmental pediatrician emphasized that he is simply too young to make an accurate assessment. Therefore, we wait for our next appointment, shortly after his 2nd birthday, to evaluate and potentially determine his difficulties.

And until then, we’re essentially waiting for the autism diagnosis.

Please don’t think this is a case of overreaction, or Munchausen by proxy, or a projection of my fears onto my unsuspecting child. This wait, approximately two months in length, is the result of 22 months of observation and interaction as we came to know our son intimately. We did not stumble onto developmental pediatrics by accident, nor were my countless hours of googling just a whim.

My son isn’t speaking yet. He doesn’t point. He doesn’t wave. He has hit every developmental milestone late, not walking until 17 months. He is fixated on repetition, flicking light switches on and off and opening and closing cupboard doors ad nauseam. He isn’t great at making eye contact. He prefers to play by himself as opposed to interacting with me, except when he wants to read — and then we read the same book, over and over, a few dozen times.

Of course, this doesn’t prove he’s on the spectrum. He might just be quirky, as are his mother and father. But put together, these symptoms alarm me. Put together, they were enough to lead me to our developmental pediatrician and broach the topic it took me months to be brave enough to consider.

So here we sit, waiting for what is to come, come what may.

And in the interim?

I want to reach out. I want to reach out for support, and information, and kindred spirits, but I also want to reach out to let anyone else waiting for the autism diagnosis know they are not alone. It’s a bit isolating, standing here on the precipice of special needs, trying fruitlessly for a glimpse into the future. I find myself comparing my son to other toddlers his age, reluctant to answer questions about his speech and development, painting a Facebook portrait of an idyllic child while I bite my nails to the quick as I post status updates.

Try as I might, I can’t keep my mind from running away from me, or devouring itself like an ouroboros, or replaying the same what-if scenarios endlessly. Will he need a special preschool? Will he take the same classes as other mainstreamed children? What about college? What about his adult life?

It’s enough to drive one mad, and the only way I know to release that torment is to write. Write to organize my thoughts, write to tell our story, and write to illuminate our journey for anyone looking for some sunlight in the depths of the darkness that is fearing for your child.

No written work on this subject would be complete, though, without some redemption and unconditional love. Redemption in the fact that my son appears to be extremely bright, and in unconditional love — in that I couldn’t not love him if I tried.

He’s a problem-solver. He figures out new toys, new situations, new data on his own, and quickly. He laughs at appropriate times and cries at appropriate times and has started to give me kisses. He has learned to get our attention or ask for something even without the benefit of speech. He has even stopped pummeling the cat while trying to pet her. His redeeming qualities are endless and reassure me that my little boy is in there, that he’s developing a personality and an ethos and a sense of his place in the family.

As for love, we have it in spades. And if this wait results in the diagnosis I suspect it will, it will not change a thing. We will continue to provide our son with all the resources he needs to reach his full potential and experience a happy and fulfilling life. We will advocate for him, and challenge him, and remind him every day that we are proud of him.

Because he is perfect. Just as he is. Diagnosis or no. So while the wait is agonizing, the future doesn’t have to be.

If you are like us and you’re waiting for the autism diagnosis, don’t despair. Your family will be fine. You will be fine. You’ll do what you have to do for your progeny, just as all parents do for their progeny, and you will get through this. Focus on the love, and the rest will inevitably fall into place.

At least, that’s my plan…while we wait.