From birth, Charles has been a self-possessed, fiercely independent child with a lively sense of curiosity and a strong attachment to his family. I’ve always seen so much of myself in him and still do. He slept in bed with me and my husband Calvin for his first two years and beyond, and I enjoyed taking him everywhere I went, frequently in a sling at my hip or carried on my back. I always felt that I intuitively understood what Charles needed. In the early days, I trusted my instincts and felt tuned in to my child.
As he entered toddlerhood, though, I worried more about whether I was doing a proper job of parenting. I read a lot of the dreaded milestone charts and began to constantly check his progress against them. I had my second son Sandy when Charles was two years old. When Charles was two and a half I was concerned enough about his speech to take him to our pediatrician and ask if we should be doing more. Charles knew a lot of words and found it quite easy to memorize things like colors and shapes, but I sensed there was still something different about his communication. I couldn’t have described it at the time but he didn’t have a lot of social language yet, verbal or non-verbal.
The doctor gave us a phone number for Early Intervention and said we could have them evaluate his speech for free. He floated the word autism past us within a list of other possible causes for speech delays. Around that time, a family member also suggested to us that we get Charles evaluated for autism, but not in a helpful or gentle way – quite the opposite. I bristled and thought to myself that Charles probably was shying away from that person because he sensed their disapproval. But now the concept of Charles being autistic had been planted, and off to Google I went.
The scare tactics and anti-autism rhetoric that bombarded me when I went online to research were horrific. I experienced a lot of cognitive dissonance between what I was reading and what I knew in my heart about my son. I did not believe that any of his so-called behaviors were meaningless. I knew he was very attached to me and my husband and that he loved us. For a long time I flip-flopped between thinking that this meant either Charles was not autistic, or that he was not the child I thought he was – maybe I was blinded by love?
For a long time I could not see the third, true possibility, which was that Charles was autistic AND he was the child I knew and loved. I had careened off course and was wading through misinformation and outright lies about autism, not knowing any better. The things I was reading not only drove a wedge between me and my son, they also drove a wedge between me and my natural parenting instincts. I questioned everything that I felt was right and thought maybe these experts knew better.
We had Early Intervention come out to our home when Charles was almost three. He was not fooled into thinking that the evaluators were there to play. He ran from them and hid in his room. They decided he was just shy, but I knew that he was clever and canny and did not want to be tested. Their verdict was that his language skills were emerging and he did not need “services” (in that case, speech therapy). I was relieved and never wanted to do anything like that again, but eventually the worries crept back in. I was still terribly out of touch with my own inner voice and doubted myself every single day. So six months later, when Early Intervention followed up with us, we agreed to more testing.
As we marched Charles into an elementary school for a new round of tests that spring, my husband Calvin and I still didn’t trust ourselves enough to tune out the “expert” advice. We had gone back and forth a thousand times on whether to just leave Charles be or keep seeking these evaluations. I was trying to stuff down the part of me that was silently screaming THIS IS WRONG! So many people had tried to reassure me with tales of how their kids’ therapists were so wonderful and their kids loved speech therapy and it had helped them so much. All of those parents had done this, why couldn’t I? Why was I so full of dread?
The tests were stressful for all of us. We quit partway through because we hated to see Charles suffering through something that was supposedly helping him. We turned our backs on the experts and I did some more reading. I pushed past the people who were telling me there was something wrong with my child, and finally I found those other voices. The voices of Autistic people saying over and over again that they wanted to be accepted, not fixed; loved, not treated; supported, not cured. I found those other parents who were not trying to change their Autistic children, just as I had never truly wanted to change Charles. I found my way back to my inner compass. I found my way back to my beloved child.
Charles has just turned five. In the past year, I have learned a lot. About autism – that it’s a neurological difference and not a disorder, disease, or defect – and about my son. He’s probably autistic, and he’s definitely perfect just as he is. We now have an appointment set for him to be seen and hopefully evaluated for autism by a child psychologist. We took a lot of time off evaluations of any kind and just let him be for a while. In some ways I am glad that we took that time to just let him be a kid, because I know that if we had had him diagnosed with autism earlier when we were still so full of self-doubt, we would have been more likely to get roped into harmful therapies and treatments. In other ways, I’m sorry it has taken so long for us to seek an autism diagnosis, because we spent too much time hoping that Charles could “pass” for typical and not realizing how that harmed him and stressed him too much. For too long we feared “the label” of autism and its stigma, not fully understanding that an autistic child still walks through the world being autistic whether you call him that or not. We’re ready now to embrace and celebrate a diagnosis, and move forward.