Autism Awareness: The importance of early intervention

A mother shares her journey of her son’s diagnosis

Written by Barbara Chiodo
Momentum’s Chief Financial Officer

The day my son was diagnosed with autism was actually a decent day. I had been struggling for a while to understand what was “wrong with him.” Now I had the answer. Alex was diagnosed at age 2 years and 4 months with a severe form of autism spectrum disorder (ASD). It was a decent day because I’d finally found out what was afflicting him and I was ready to go to step two, the “how do I fix this?” phase. I built my career by going where chaos was and bringing law and order. But this time, I had real, raw, unpredictable chaos, without a roadmap on how to create law and order

We are a bilingual household; I grew up speaking Italian and, as such, I wanted to teach my child the language of love and food. For the first two years of his life, I only spoke Italian to him—bilingual speech therapists recommend identifying one parent with one language—so we did that. Alex was a mini-me, he had so many traits that I had as a child, such as being so hyper focused on watching cartoons that he would not hear us calling him. I found this resemblance so cute. He would giggle all the time. He was incredibly attached to me, sometimes I thought maybe a little too much, but he was truly adorable. At about 18 months, Alex was still not speaking, but I did not worry as the consensus was that in a bilingual household, speech delay is normal.

Meanwhile, we moved to a new house and Alex’s brother James was born when Alex was 22 months. We arrived quickly at Alex’s 2nd birthday, and suddenly it dawned on me that he was still not speaking. The pediatrician, after the 2-year-old check-up, did not seem concerned about this lack of speech, noting that even the M-CHAT returned fine. But my instinct was telling me that I was missing something. Upon a friend’s advice, I took him for a private evaluation to a speech therapist.

While we were in the evaluation room, Alex was playing as usual with his trains. He loved the wheels of the train so much that he kept spinning them fast and inspecting them carefully by holding them up to the corner of his eye. I daydreamed that he was a mini Da Vinci and had already identified a way to build a high-speed train. I was pulled out of my imagination when the speech therapist let slip that she saw some red flags. I startled, gearing up to high alert: “Red flags of what?” She did not respond but she hinted that the “hyperstimulation of the peripheral vision” was a red flag”. I exited the session very confused, I was not a doctor, but I had the power of Google in my pocket. So I Googled: “hyperstimulation of the peripheral vision” and I found an article entitled: “Early Signs of Autism”. Oh no. I started reading: (i) failure to respond to name when called, check, (ii) excessive giggling, check, (iii) excessive attachment, check (iv) playing with toys not functionally (spinning wheels), check. Oh no. And so on… (v) banging head, OMG. He was doing it, I had completely dismissed it, I recall asking the pediatrician and he told me that it was for attention… no, no, no,… six out of the nine symptoms listed, Alexander had it. I knew what he had or at least I was very close. I had to get some help. But from whom? Neither the pediatrician or the speech therapist were able to point me in the right direction. I called my friend Susanna panicking. I knew she had a daughter with autism, and she was my only resource. Susanna was calm and understanding and recommended I see a developmental pediatrician, which was a new world to me. I had no idea that “those” existed. But I immediately got a referral and booked an appointment.

The months that followed were a struggle: we waited months on a waiting list, then brought Alex for several expensive evaluation sessions. Meanwhile, the Montessori school where Alex was enrolled strongly suggested I enroll him somewhere else as “the school was not a good fit for him.” That was interesting, considering my mum in Italy is a Montessori teacher and uses a completely integrative and inclusive approach. Once we got to diagnosis day, it was a relief. It was a good day, as I finally had a piece of paper that put a name to this situation. I could now give Alex the specialized care he needed. The doctor recommended we visit a couple of early intervention centers, highly specialized school-like centers for special needs.

I was there at the first opening. That was the worst day of my life. About 20 parents were touring the facility, I looked at them wary, desperately not wanting to be part of the “special need parents” club. Nobody was talking to each other, too much pain and uncertainty that was evidently taunting all of us. It was extremely different from a chatty, gregarious preschool tour.

At some point during the tour of the amazing facilities, we were put into a room with two-way glass to observe the program “Autism Awareness: The importance of early intervention.” And there it was: my dark alternative life to the parenthood I had envisioned. In front of me was a room full of all children with assorted disabilities. Each child had a therapist working on skills that are not even a “thing” for neurotypical parents: a smile, a response to their name, looking at their eyes, being able to caress your child without her bursting into a tantrum, holding the spoon, being able to stand independently, and so on. I could clearly see Alex in that room, I could see his life being like this forever. I could not hold it together anymore. I started crying, softly, hoping it was silent. I hardly cry but the emotion was too raw and real to handle. I was mourning the loss of my child, my hopes and dreams for him, and was entering a different path to parenting. It was the worst day of my life, but it showed me the way forward, which I embraced. That day put our family on the path to early intervention which helped us so much. Since then, Alex has made tremendous progress. He is in a regular school with an aid who helps him focus and be engaged in class. He is able to access the curriculum like every other child, and he even won a national art competition over thousands of participants. This is perhaps another story.

Early intervention put my son on the right path, accelerated his progresses. For that, I will be forever grateful to all those that put me on the right track early, and I would always advocate for that. I urge every parent, educator, and pediatrician to look at the signs, early on, and get a professional evaluation. There is no stigma in recognizing early that something is wrong, only an opportunity to address the condition early when the brain is still very flexible, and to be able to make a huge difference. Don’t wait and hope your circumstances will change. The only thing you can change is your mindset and approach and that makes all the difference in a child’s life. 

There are many resources available to families. You can learn more here.