Autism

Developmental delays in siblings of children with autism

What to do if you’re worried about your child’s development?  

Today, I’d like to share with you a story of hope for all the moms whose children have developmental delays. I’d like to preface this by saying that if you’re worried about your toddler’s development, always get them checked out. You can either contact “Early Intervention” in your state or make an appointment with your child’s PCP to get a referral for a developmental pediatrician. Click here to read my post about the early signs of autism in babies and toddlers. 

Siblings and autism

When I was pregnant with Jude, I remember being terrified of the possibility of him having autism too. Charlie hadn’t received his diagnosis until after we were pregnant with Jude. I was afraid I’d never hear the word “mommy” from one of my sons. That thought was paralyzing. These are moments I had dreamt about since before becoming pregnant with Charlie, and had never experienced before. Simple yet magical.

In his first year, we monitored Jude with extra attention. Siblings of a child with autism are more likely to be autistic too. It’s difficult to get an exact percentage but autism rates in siblings are somewhere between 8% and 30% depending on which professional you ask, and always more likely in boys. There was nothing we could do about it except monitor Jude closely to get him the help he needs early if he showed symptoms of autism.

Milestones and autism

I remember feeling a huge sigh of relief when Jude finally gave us a big gummy smile. Social smiling is one of the first important milestones so I was on the lookout for it.

But as time passed, Jude was hitting his milestones late. He pointed later than most kiddos, wasn’t walking until he was 15 months, and was barely talking. He was evaluated by a speech therapist at 15 months and scored in the first percentile for both expressive and receptive speech. The bottom of the scale. We saw a developmental pediatrician to get her opinion. Was it autism or just developmental delays?

Jude’s autism evaluation

The Autism specialist wasn’t sure if Jude was on the autism spectrum. He had severe delays but he was also showing a lot of great signs like joint attention and eye contact. 

She wrote:

Jude showed social and communicative intent with difficulties sustaining interactions due to impaired self-regulation. At this age, his symptoms could be explained by developmental delays and would not meet criteria for autism, but given +FH would need to reassess at 24 months.

Diagnosis:
1. Delay in physiological development
2. Speech and language disorder

She recommended speech therapy twice a week, as well as OT for his sensory/feeding issues and PT for his motor delays. The physician also encouraged us to get Jude in school so he’d get that peer model he was missing at home with Charlie.

Montessori School

Jude started Montessori school and he blossomed. By the time he turned 2, he wasn’t severely delayed in speech anymore and he was able to eat different foods without gagging. He even started showing interest in other kiddos. Autism wasn’t a concern anymore. 

Now at 2 1/2 years old, Jude is ABOVE average in speech. His fine motor and cognitive skills are amazing. Actually, he’s doing so well that he was discharged from speech and occupational therapy this week. He’s still struggling in several areas. His rigidity/OCD is getting worse, and he’s still in physical therapy for some clumsy physical behavior and under-developed muscle areas. Overall, though, last year was amazing for him. We went from questioning whether he was autistic like his big brother to being able to have little conversations with our son, something we’ve never experienced with Charlie. 

Finding the balance between hope and being proactive

To all the parents out there who are worried about their kiddos, I always recommend being proactive if you’re worried about your child’s development. If we hadn’t taken Charlie’s delays seriously, we wouldn’t have been able to get such an early autism diagnosis and start ABA therapy right away. So schedule an evaluation to see where you child stands. Most states have an early intervention program (up to 3 years old) that provides kids who are developmentally delayed with therapy for free or very cheap.

That said, Jude is the proof that some kiddos are just slower to develop than others. Jude was born early and didn’t have a peer model until he started school. For those reasons, it was harder for him to blossom on his own. Don’t lose hope if your child is behind. You never know. And if they indeed are autistic, well, it will be okay too. 

 

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