ASD in siblings: From doubts to relief

ASD in siblings: Baby Jude

When we decided to conceive Jude, we didn’t know yet that Charlie had autism. Would we have waited longer if we had known? I don’t know. Maybe. Jude brings so much joy into our lives, life without him would be a lot sadder. Without Jude, Charlie’s autism would be harder on us. Today, I’m going to tell you more about our little Jude.

Pregnancy and birth 

My pregnancy with Jude wasn’t an easy one. I suffered from terrible morning sickness the first 4 months and then I developed heart issues (SVT, and tons of PVCs and PACs). Baby Jude was due late July but he ended up being born on the 4th of July, after 3 weeks of prodromal labor. He was born with the cord wrapped around his neck which was kinda scary but the doctor was super skilled and cut it in seconds. The doctor was an old pro who’d delivered over 10,000 babies! Jude weighed 6lbs 8oz, which was more than Charlie who was born full term. I’m so happy about Jude being born on the 4th of July. We kept joking about it due to me having constant contractions in my 3rd trimester…

“At this rate, you’re gonna have a 4th of July baby”

…and I sure did, which makes me super happy. He gets fireworks every year! 

The risk of autism is higher in boys

When we found out Jude was a boy, I was happy. I’ve always pictured myself as a mother of boys. You know, playing soccer, dressing them in the clothes I loved to wear as a tomboy, and playing with cars. Of course, girls can do that too, but in my head I was going to be a boy mom. That said, after finding out that Jude was a boy, I was also afraid. I was scared because boys are 4 times more likely to be autistic, and autism runs in my family. We love our Charlie but I don’t wish autism on anyone. As a mother of a severely autistic boy and as someone with autism myself, I consider autism a disability. I wanted to experience the joy of raising a neurotypical child too – you know, one of each.

I did some research. Okay, a lot of research. I asked all of Charlie’s doctors and therapists about the odds of the second child having ASD (Autism Spectrum Disorder) if big brother is autistic. They all gave me different answers ranging from an 8% chance to 1 in 3, though they agreed on one thing: the only thing we could do at that point was to keep a close eye on baby Jude’s development. 

Now and then 

Jude’s first 18 months of life were stressful. He wasn’t hitting his milestones on time, and wasn’t talking. He showed a lot of the same autism red flags Charlie exhibited: flapping hands, lining things up, picky eating, not speaking, and rigidity, but not to the same degree and without the regression in skills that Charlie had. In my head that was it. For a few months, I convinced myself I wasn’t going to experience raising a neurotypical child and that Jude would lead a difficult life. The doctors and therapists weren’t sure whether or not Jude had ASD at that time; they couldn’t say definitively either way. He scored near the bottom of the scales for all speech tests and assessments, and had issues in physical development as well. On the other hand, he showed great skills like pointing and joint attention. 

We agreed to keep monitoring Jude closely and start therapy. We started with speech therapy twice a week, occupational therapy twice a week, and physical therapy once a week. Additionally, Jude started going to a Montessori school part-time, and then full-time. 

Within a few month, his progress with speech was great. He started signing “more” and saying “mama”. A year later, he’s now almost caught up with his peers. He sings all the time and talks our ears off. 

His cognitive and fine motor skills are amazing. We’re still dealing with rigidity, sensory issues and violent temper tantrums but we’re almost certain it’s not ASD despite Jude still showing some autistic traits. There’s no denying that Jude loves people. He’s an attention seeker!

What is it then?

What is it if not ASD? It’s clear that Jude has issues, and as a mom it would help me to put a name on what’s causing them. Two different doctors mentioned the umbrella term of disruptive behavior disorder to us. I’m not gonna lie, the first time a developmental pediatrician mentioned ADHD and disruptive behavior disorder to me, I wasn’t happy. After all, he’s only 2. Sure he’s very strong-willed, but the terrible-twos aren’t a myth, are they? It seemed a bit excessive to me. Well, today was our follow-up appointment was with a different developmental pediatrician and she mentioned the same thing to us. Ouch. This is the most likely path for us and it gives us things to work on with him.

Behaviors at this time suggest a child with a more challenging/difficult temperament (decreased approachability and increased activity level, distractibility, intensity and sensitivity). Monitor for disruptive behavior disorder when he’s older. 

His ongoing diagnoses are mixed receptive-expressive language disorder, delay in physiological development, developmental coordination disorder, and last but not least, problem behavior, for which we were recommended to start the Triple P method.

Overall, we’re satisfied with Jude’s progress. He isn’t developing exactly as he should but his issues are so minor compared to Charlie’s that we are relieved. It’s not ASD. Just writing these words make me happy. We have a child who doesn’t have autism.

3 years after I wrote this article, Jude was diagnosed with ASD Level 1. He was 5 years old. It was ASD after all… His struggles are so different from Charlie’s though. He’s still the same strong-willed,  talkative, smart, and creative little boy I describe in this post 🙂 We haven’t told him about his diagnosis yet, but I will write a post about the process, once Jude knows, and agrees to it.