Yes, in case you are wondering, I couldn’t comb my hair for almost ten months. Let me tell you why.
Our son’s meltdowns and aggression were getting worse and more frequent each day. We had to keep one adult within 4 feet of our son ALL the time to keep him distracted from aggression (hitting, throwing, biting, scratching etc.). We were trying to control his behavior but missing crucial understanding of how to support his needs. We were also not able to teach back then, I didn’t know how to connect with him.
I was just starting my second trimester of pregnancy with our second child when we received the official autism diagnosis for our son, then 26 months. (see United States’ CDC’s DSM criteria for diagnosis) When my husband and I walked out of office from a development pediatrician (In the US, a developmental pediatrician or psychologist can formally diagnoses autism in children), my anxiety took over completely.
The pediatrician just said, “Your chances of making your son talk are slim because he is diagnosed with severe support needs.” It felt like the whole world collapsed on me. I didn’t even know if I could help my son, and if yes, then how? Where would I start? I wanted to support my son best way possible without causing any trauma like ABA does.
I had a significant anxiety attack the next day. My son’s meltdowns were getting out of control. But I was not able to manage my own anxiety. I had physiological symptoms of heart ache, and I thought I won’t be able to provide for my unborn girl child as I couldn’t even eat or gather myself. For about a week, I continued to be in a deep state of hopelessness. My husband dealt with the situation silently.
Our family said they were always there to support us, but it didn’t matter to me. I didn’t care. Nothing mattered. All I wanted was for my son to talk and be happy. But I wanted to teach this using his ways not controlling his autistic characteristics in any manner, I had to figure this out.
After about 10 days, when my husband was singing Five Little Ducks with my son, for the first time ever, my son spoke. He said, “quack”. This was a monumental event in our life! This made me reflect on the situation objectively, and I thought, I can make a difference in my son’s life if I really want!
That night, I started researching autism and therapies. During the daytime, while my son was napping, I talked to autistic adults online, reached out to the best of the best autistic advocates / professors in the world such as Stanford University, UC Davis’s mind institute, Speech and Language therapists, OT, behaviour therapy agencies, bio gut therapies / vitamins and parents who had autistic children. I lost track of my time as well as day and night. I only knew it was dinner time when it was time to feed my son. During the day, I spent as much time as I could with my son connecting, learning his brain and during the night, I continued my research about autistic brain.
I quickly learned that behavior therapies are based on eliminating behaviors and making children “work for” food, toys or screen time. This gives significant trauma and an unbelievably narrow growth profile where the child may learn to talk minimally but fails to develop confidence being in his own shoes, motivation to communicate, being happy and abilities to navigate world. It also fails to presume competence in an autistic child. Neurodiverse adults taught me Neuro-affirming alternatives to behaviorism and compliance- based therapies.
Moreover, our son was not much interested in doing something in return for toys, candies or such rewards, but he showed interest in visuals and music. Vitamins and supplements helped his overall health but it didn't make him talk. I slowly figured out his style of learning, interests, dislikes and reasons of anxieties. Soon, I started to connect with my son at a deeper level. My son started to trust me. I found that building intrinsic motivation was monumental to building small successes.
Within a few months of his diagnosis, I was able to join his world of imagination! Thanks to all feedback I got from autistic adults. This feedback changed our quality of life and his communication. My first success of teaching him communication was through a visual board. Through a visual song board, I was able to build his receptive skills very quickly. He was also showing a lot of interest in stories and understanding the reasoning (bottoms ups thinking is a common strength for autistics) behind them through a visual (for example, a visual representing sister is crying because her lollipop fell).
After a few weeks, I was able to teach him basic nouns, a few signs and sing on his favorite songs (We had a collection of more than 100 songs). His receptive skills were getting better, but not his meltdowns or expressive communication. We started teaching him one sign at a time. He soon started to sign “more”, babble a lot more and point to pictures; this was a significant milestone for him to acquire communication skills.
In the midst of all this, I gave birth to our daughter and tried to recover as soon as I could. My daughter also had gross motor delays, so I had to help her with physical therapy for a year or so to teach her how to crawl and walk.
Within a year of his formal diagnosis, our son had learned 40+ single words and had started to put together two-word phrases! On the meltdown side, my husband and I were also getting very good at identifying reasons of anxieties and applying preventative strategies. I kept going, and at around 3.5 years, he started to speak in longer phrases. His first phrase was “I want blue balloon” and then slowly after “Can I have blue please?” By this stage, his meltdowns had reduced by about 90% of what he had before his diagnosis.
Our son is now five-year-old. He speaks fluent sentences, loves playing with friends, plays complex board games beyond his age and, most importantly, he is a very happy child. After 4+ years on this journey with 6000+ hours of research and partnership with autistic adults and professionals, I’ve landed on research-baked techniques to help autistic children not only achieve basic life skills but excel in what they want to do!
Through braloooo, I hope to dedicate my life to helping autistic children to become the best version of themselves. If you are a parent who is struggling with your child’s tantrums, meltdowns, non-speaking and just being happy, I want to help! Let me show you how you can help your child become the best version of themselves just like I did for my son!
-Monal Patel, Founder of braloooo
