While waiting for Noah to have his formal evaluation for Autism through UCSD, I began to carefully observe and analyze his current behaviors, play skills and ways of communicating. Was he engaging in repetitive behaviors? Was he repeating words out of context? Was he not making eye contact when using his words?
Looking for answers, I spent hours analyzing old photos and videos of Noah to see if I had missed the signs. What I observed was that Noah was engaged with other kids and adults, making eye contact and showing an interest/affection with others. I was not wrong in the way I interpreted his early social behaviors. There were a few things about his early development that I had noted but chose not to dwell on at the time. One big “red flag” was that he rarely pointed to communicate. He would point to body parts or a bird or airplane in the sky but his overall pointing for communication was not there. Another early concern was that he did not try and comfort me when I was sad. Noah also enjoyed activities that were a little out of the ordinary. For example, he really enjoyed stepping on things and the sensory input he got from his feet. Noah was also extremely detail oriented, organized and helpful around the house. If I left a drawer open in the kitchen, Noah would immediately go and close it. He always remembered exactly where items go and which rooms and would make sure things were put back in the right place.
Accepting your child has autism is very similar to the grief cycle. Predictably so and hard to admit, I was in denial. Even as I write the word denial, I hate the word because it assumes the denial is intentional. How can you be in denial of something that literally has never occurred to you? With 20 years of experience working with children with Autism, I was the most qualified parent of all to see Autism in my child yet I just did not see it with Noah. The reason I did not see it at first was because of our strong bond. Noah is very attached to me and an affectionate little boy. However, parental attachment and social communication are two very different things. Noah can simultaneously want to play with me yet also be unable to communicate and direct his words to me. The second reason, I was unable to see Autism in Noah is because his early development was typical. It was only as he got older that his play skills and language did not take off as it should. While Noah is almost 3 years old, he still plays and talks like a child who is closer to 18-24 months old. The third reason I was unable to see Autism in Noah is because Noah is social and has an interest in other children. However, just because he has the desire to interact and can initiate does not mean that he has the age-appropriate social skills and language to do so.
The next part of the grief cycle, bargaining, is also painful to write about. Noah’s assessment at UCSD was two months away and so I hoped that with two months of speech therapy and ABA, his communication and play skills would take off to the point where his characteristics of Autism would hardly be noticeable. Because I’m a school psychologist and administer the very same assessments that UCSD does, I knew exactly what they would be looking for and so I practiced with Noah. I sat him down and the table, did block imitations, writing and sorting. I also worked really hard on his pretend play skills. We practiced feeding the baby doll, kissing the doll and pretending to have a birthday party for the baby doll. Noah, conceptually, has no idea what a birthday party is beyond the happy birthday song but yet I taught him to make a “cake” from playdough, put candles in the cake and blow them out. I knew pretending to have a birthday party for the baby was going to be a scenario on the assessment and I wanted him to look like he had some basic imaginary play. My husband would walk by us as we were “pretending” and just shake his head and tell me to stop trying so hard and just let Noah be Noah. I just couldn’t stop because I thought that somehow if I could get Noah to show less symptoms of Autism, then everything would be ok.
The day finally arrived for Noah to have his assessment at UCSD and it was everything but ok. Because the assessment is done as part of a research study, the first hour of the appointment was spent filling out consent forms followed by a study where they tried to measure his eye blinks. It was more than an hour of sitting around and trying to keep Noah entertained before the psychologist started the assessment with Noah. The psychologist made very little effort to establish rapport with Noah which really frustrated me. A few minutes of sitting on the floor playing together could have gone a long way but instead, Noah was asked to sit at the table and get to work right away. During the assessment, Noah demonstrated very few of the things I taught him at home and did not generalize his skills to the testing situation. During free play, instead of choosing the baby doll to play with, Noah chose a pop-up toy. When the psychologist introduced the birthday party for a baby scenario, Noah did put the candles in the playdough cake like I taught him but no one was fooled into thinking that he actually understood what that meant. At the end of the very painful evaluation, the psychologist did diagnose Noah with Autism, which I was expecting. What I was not expecting is that he used the term, “Classic Autism” to describe Noah. Not, “I’m not sure” or he has a little of this and that, but he very much has Autism. Now I know Noah has so many more skills and strengths than what was shown that day, but to this psychologist, Noah was just another two-year old boy with classic Autism and that really stung.
After the official diagnosis, I became simultaneously angry and depressed. I found myself being resentful of others who have typical children. The pandemic also provided the perfect environment for me to isolate further. While I was already physically isolated from others, I also made no effort to keep up with friends and gave very generic responses as to how we were all doing. I let very few people into my inner circle as to what was really going on with Noah. I cried all the time and barely slept. I asked God, how he could be so cruel to take away a son’s ability to communicate with his mother. I thought that maybe this was some cruel punishment for me, some payback for the pain I may have caused some parents in my career when diagnosing their children with disabilities. I blamed myself for not noticing Noah had Autism sooner. I blamed myself for going into labor early and for Noah’s premature birth. I blamed myself for being an older mother and more high risk for having a child with a disability. Somehow Noah’s Autism was my fault. I also blamed the pandemic for delaying Noah’s in person services and also not providing the social opportunities he desperately needed.
It’s been 3 months since Noah was officially diagnosed with Autism and I’m in a better place although every day is still hard. Noah is making progress with his therapies although slower than I would like. He is using more and more words every day, starting to combine words and using short phrases. I have accepted that he has Autism and this will be a lifelong thing for him. Part of acceptance means letting go of the dreams I had for Noah and reimagining life for him and us as a family. He may not become a star athlete or Valedectorian, but my hope is that he will be able to live a full and meaningful life. In a world where differences are not always accepted, it’s scary to think of my baby boy out in the real world and so I worry about his future. The one wonderful thing about the pandemic is that we have been able to keep Noah safe at home. At home, he is free to be himself without any judgment. When I start to feel sad, I remind myself that Noah is a very happy boy who has no idea that he is different. Noah loves to smile and laugh, is so silly and playful and has the sweetest little soul. Noah loves his life, feels connected to his family and this gives me immense peace.
The Noah Connection 