A Provisional Autism Diagnosis

Anyone who knew me when I was pregnant can tell you that I was an anxious mess from the second I saw those two pink lines. I woke up nightly during my first trimester with vivid stillbirth dreams, and I would wake up crying after having created the worst possible scenario in my head. By my third trimester I was counting his kicks and movements closely. When it had been too long without feeling movement, I remember making Dayna drive to 7-Eleven to buy me a slurpee, and then I’d JOLT Lucas awake in utero with the cold and the sugar. It’s a miracle that he has any form of a sleep habit considering how often I disrupted his cycles in the womb. Once, she came home to dinner burning on the stove and me holding my belly, eyes wide, just waiting for a kick because I had realized while cooking dinner that it had been too long- then a subsequent sob-fest when he finally shifted and I cried a sigh of relief. I. Was. Wreaked. Constantly. People ask me all the time if we plan on having another one. When I try to explain that I was a horribly anxious pregnant person, people’s response is usually “Oh EVERYONE is nervous when they’re pregnant. It’s normal.” Well, it may be normal, but I am never putting myself through that kind of pressure again. I am not built for it.

After reading the title of this blog post, you are probably wondering why I’m going all the way back to conception to talk a about Lucas’ current diagnosis. And I’m not entire sure why, but you have read this far so thanks for humoring my streaming thought processes. I guess, all this to say, that when I held my son two years ago, 6 lbs 12 oz, 19″ of perfection, I think I started breathing again for the first time in nine months. When he hit each milestone: rolling over, social smiles, solid food, crawling, walking- I breathed easier as well. And somewhere along the way, I let myself relax. I had done it. Months of kale smoothies and prenatals and decaf coffee had paid off. And then in my postpartum world of gentle parenting and breastfeeding and falling in love with my son- my light- I suppose I thought “I did it. I carried, birthed, and am raising a typical child.”

I was mildly concerned about his speech delay. He was showing some signs of comprehension and was always babbling, so I told myself that he was just on his own timeline and that language would come. Then, after our big cross country move last August, slowly I noticed a regression of skills. At our 18 month well-baby appointment, we had our first routine autism screening. I won’t go too far into that, since I’ve blogged heavily about it already, but to sum it all up, our scores were consistent enough to raise concern that Lucas might have Autism Spectrum Disorder (ASD). We had our follow-ups with our specialists which got us into early intervention services: speech and occupational therapy and agreed to revisit Lucas’ progress in six months time.

And just like that, it’s been six months since we first met our specialists. Lucas has been working hard at speech and OT, but to me the progress is pretty minimal. Our follow up with our speech specialist showed that Lucas still has a severe speech delay. No surprises there. I was sort of expecting to walk in to our follow up with our developmental specialist and have him asses Lucas similarly. More of like a catch up session to see how therapies are going. Maybe we would schedule his official autism diagnosis eval for a future date while we were here.

We met with our developmental specialist last week. He observed Lucas and asked me questions like “What are your biggest concerns? How do you think therapies are going? Do you see progress?” He was gentle and kind with my boy, and the visit went much better than most doctor’s visits. And then suddenly, he says

“So Tricare allows a provisional diagnosis of autism in order for a patient to receive services that they otherwise wouldn’t qualify for without that diagnosis. So for the purpose of Lucas to get in home ABA (applied behavioral analysis) therapy by a masters degree certified behavioral therapist, as part of my treatment plan I would like to go ahead a give Lucas a provisional diagnosis of autism.”

If it’s possible, my heart sank and swelled at the same time. I wasn’t expecting this conversation today. Since the first mention of autism back in September of 2018, I’ve had time to prepare for this news. It’s come at me in waves of tests and evals and treatment plans and doctors visits. All the time preparing me. So why am I so caught off guard? Tears burn the corner of my eyes, but my wife couldn’t leave work so I’m at this appointment alone, so crying isn’t an option. But simultaneously, I’m beaming! This treatment plan sounds like JUST what we need. Therapy is around 20 hours a week of in home treatment where an autism specialist works intensively with Lucas on a range of skills like social and group skills, academic readiness, functional communication, expressive and receptive language, behavior reduction, potty training and daily living, and so much more. Behavior happens at home, so in home therapy makes so much sense to me. However, it will not take the place of speech and OT, so we will still be enrolled in that.

So with our ASD diagnosis (provisional) we will be visiting our developmental specialist more frequently and in one year we will schedule an evaluation to see if the diagnosis sticks. However if Lucas has improved to a point of optimal outcome, he may be able to shed the diagnosis all together. Time will tell.

I cried the second that I got in the car. Such a range of emotions. As I called Dayna, I kept repeating to her “It’s so much good stuff. I don’t know why I’m so upset.” I am beyond excited to start ABA therapy. We are ready to WORK. It will take a month or two to get enrolled and to schedule our eval. But I just feel so encouraged by this treatment option. It feels like, at the very least, I’m able to DO something for my son. It will be pretty time consuming, but he is my only baby. Why wouldn’t I do this for him if it’s his best shot?

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