Lucky Friday the 13th: Getting an Autism Diagnosis for my Son

“It looks like the next available date for an evaluation would be…. Friday, November 13th at 8am”.

“Friday the 13th? Really? What’s the next one after that?” I inquired. I was always a little superstitious, and everyone knows that Friday the 13th is unlucky.

“Nothing until December.”

I sighed. “OK, then. Friday the 13th it is.”

It was May 5th, 2015. I had 6 whole months to forget about this ominous evaluation. In the meantime, I would just continue to assume that my speech-delayed and “spirited” (aka- insanely difficult) 2 and 1/2 year old was just hitting milestones at his own pace. This is what everyone including our own pediatrician had been telling us all along. Until this last 30 month check-up when the doctor started asking us very pointed questions.

“Is he affectionate with you?”

“Yes, absolutely.”

“Does he respond to his name?”

“Not really. Well, sometimes. He gets fixated on what he’s into a lot of the time.”

“Does he make eye contact with you?”

Chris and I looked at each other.

“I don’t know,” I replied. “I never really paid attention to that. Not all the time.”

“Miles,” I called in an attempt to have him look over at me. No response. He continued to blissfully play with a sippy cup he had snatched out of the diaper bag.

“I don’t want to scare you,” the pediatrician went on to say, “and often any mention of ‘the A word’ to parents tends to do that, but I think you might want to consider having Miles evaluated for autism spectrum disorder”.

Chris and I looked at each other again. We didn’t say a word.

“The wait time for an evaluation is long,” he continued, “so you might want to call to make an appointment sooner rather than later.”

We had driven to the appointment separately and didn’t have a chance to talk about this until later that evening. We were both pretty shocked by the suggestion.

“I think we misled him when we said he didn’t made eye contact,” Chris explained. “He totally makes eye contact. I’ve been paying attention to it today.”

“And he’s SO affectionate,” I added. “Kids with autism aren’t supposed to be affectionate, are they?”

Still, we were nervous. Miles was clearly different from other kids his age. He wasn’t talking yet aside from a few words, and was frustrated by his inability to communicate with us. Mealtimes were a nightmare. He was a great eater when he first started with solid foods, but had been ever so gradually dropping item from his diet. There were frequent meltdowns at mealtime. They were incited not only from foods he didn’t want, but also foods he did want that weren’t prepared the right way. The wrong spoon or bowl could easily lead to 20 minutes long freak out. I felt like I was walking on eggshells in the kitchen with him.

We decided it made sense to make the appointment. We didn’t think Miles had autism, but it couldn’t hurt to rule it out, could it?

Miles started private speech therapy soon after we made the appointment. He began to make progress with his speech. “I… want… water,” he would slowly repeat after us.

“Great job!” We’d praise.

See, it was all about his speech delay. Miles did NOT have autism. I would keep the evaluation scheduled knowing full well that the psychologist would confirm what I already knew. He was fine.

But still, I spent all of my time after the boys were asleep researching symptoms of autism. Obsessing, really. It was so confusing. Miles did display many symptoms listed as signs of autism, but not all of them. And what 2-year-old didn’t have difficulty adapting to a change in schedule or have a narrow interest in topics? Aren’t all little boys fixated by Thomas and his friends?

As Friday, November 13th approached, I began to have a gut feeling that we’d be be receiving news we didn’t want to hear. Sure enough, after observing our happy beautiful oldest son for about a half hour, the psychologist confidently confirmed that he did exhibit symptoms consistent with mild to moderate autism spectrum disorder (ASD).

I tried my darnedest to fight back the tears as the psychologist inundated us with packets of papers with instructions on the next steps. It was overwhelming. It was terrifying. We had officially entered the unknown.

“I heard of kids being diagnosed with autism when they are young, but by the time they are in school they drop the diagnosis. Do you think this could happen for Miles?” Chris asked.

“I feel very confident about his diagnosis, but if you want to get him re-tested in the future, there’s certainly no harm in that.”

Everyone was silent on the car ride home until I finally broke down into tears. What did this mean for my baby boy and his future? How would this affect our family?

I had a flashback to a conversation that I had with my boss when I was about 6 months pregnant with Miles. The topic of autism and vaccination came up. My boss said that one of his greatest fears when he decided to have kids was having a child with autism. “And it’s so common these days,” he said shaking his head. “Thankfully, my kids were OK.” Now, here I was on Friday the 13th receiving news that my boss’s greatest fear had become a reality for me. My son had autism.

I looked back at my beautiful baby boy quietly staring out the window. His ever-rosy cheeks matched his perfect pink lips, and he pushed away a blond curl the fell in front of his eyes. This child has been the light of my life from the very moment he was plopped down on my belly in the delivery room. We instantly connected. I immediately knew I would do anything to protect him always and forever. No diagnosis could ever change that. Nothing could ever change that.

Miles newborn
Sweet Miles at 5 days old. Love at first sight.

Looking back on it 1 and 1/2 years later, getting a diagnosis has been the best possible thing for our family. It has allowed us to receive a multitude of state-funded services we could have never otherwise have afforded. Miles is now equipped with a team of therapists and parents that are more aware of the challenges he faces on a daily basis. Putting a name to his struggles has actually been a blessing. Watching him learn and grow has filled our hearts with joy. I can honestly say without a doubt that if I could take away my son’s autism, I wouldn’t do it. It makes him who he is, and my God do I love who he is. He is the most loving and hilarious little creature the world has ever known. His smile lights up the room, and his sweetness permeates my soul. Friday, November 13th, 2015 was certainly a difficult day for our family, but it was anything but unlucky.

Miles at 3
The endearing Miles at 3-years-old, a couple month after receiving his ASD diagnosis

 

4 thoughts on “Lucky Friday the 13th: Getting an Autism Diagnosis for my Son”

  1. Having 4 children on the spectrum, my husband and certain traits sprinkled around for myself, with your attitude and by reading and picking up skills you will cultivate a special person. I also have grandchildren on the spectrum. With the right tools Miles will be able to take control of his life, and thrive. Equipped with sunglasses, ear plugs, a weighted blanket for comfort and clear instructions to prepare him for his day. Call me anytime. My number is still the same.

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  2. Thank you for posting this. You have helped educate me in clear and personal writing. We love Miles. So grateful that he has the love and support of wonderful parents, grandparents, aunts and uncles, therapists. Will continue to follow your blog.

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  3. I may not be blood-related to Miles, but as I spent practically every day with him from his infancy to his toddler-hood, he is extremely important to me. He’s, quite simply, my favorite child on Earth, and one of my favorite people in general. I love everything Lora has said about Miles here, but I especially appreciated her saying she wouldn’t change things if she could. People’s personalities are the results of such a complicated combination of factors, both nature and nurture. This is why you’re more likely to encounter your doppelgänger—someone who looks just like you—than you are to find someone whose personality is exactly like yours in every way. Miles can be a lunatic at times. He can be exhausting. He can get frustrated, and it can be frustrating. But if he were different, he wouldn’t be Miles. And I love Miles for the inquisitive, intelligent, hilarious, tender, handsome, weirdo ball of energy that he is. I very much look forward to seeing the person he continues to evolve into. And I feel that his absurdly cute, little brother needs a shout-out, too.

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  4. I was afraid it would make me cry. It did. But it’s ok cuz I know that Miles is ok now and always will be. He’s the apple of gramma’s eye. So smart and sweet and loving. He’s growing beautifully and it’s a joy to watch. He’s got two great parents and the most precious little brother that ever could be – what more could he possibly need! I love you all to the moon and back!

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