Autism is described as a complex neurobehavioral condition characterised by poor social skills, difficulty in communicating, difficulty in learning, repetitive behaviours and a sense of disconnection from the parent. A child diagnosed with ASD (Autism Spectrum Disorder) can experience anxiety, hyperactivity, and an array of other symptoms associated with the disorder. To a parent who has a child diagnosed with autism, these definitions do not begin to describe the heartache and uncertainty of what lies ahead. My Autism Journey tells the story of Rachel Blignaut’s discovery and navigation of the condition.
I am Rachel, and I am sharing my autism journey with the hope that it will help other parents navigate the minefield of information, concerns, prognoses, treatments, programs and questions with less difficulty—gathered by tears, persistence, and frankly a lot of annoying people. It is my hope that this column provides new parents, teachers, family, friends, and the general public some understanding of this complex disorder.
My family’s journey with autism started when my son was 15 months old. At this stage he had reached most of his developmental milestones, and our concerns regarding those we felt he had not reached were mostly ignored by both the preschool he attended and his paediatrician. The first of these was regarding his speech, which we felt was delayed. The preschool did not seem concerned by this and told us that he talks when there is no one around. During this time, however, we also noticed that he did not make eye contact, his speech developed very slowly (to the point that he did not talk at all), he did not point to things to draw your attention to objects, did not react to his name and did not want to play with age appropriate toys. We also raised a concern regarding food as he seemed to be sensitive to the texture of certain foods and was not eating. The paediatrician’s response was that we need not worry as he will eat when he is hungry, and that we should give him time.
It was just before my son’s 24-month visit that a friend mentioned he might be on the autism spectrum. I felt like running her over with my car. To my mind, autism was that beautiful little boy in Mercury Rising with Bruce Willis who needed constant care. I had no idea what autism spectrum disorder entailed, but my son did not resemble that little boy. It turns out that my friend had observed something that I had not. As parents, we are sensitive and protective of our children; precious little beings who are immune to the negativity in the world. However, rather than disregarding her observations, I took her suggestion and made a list of my concerns for the paediatrician. If I can leave you with a small suggestion in this debut column, it will be one of listening. Sometimes, others are more likely to see the things that you as a parent do not see, and these small observations can be helpful.
In the next My Autism Journey I will share the findings from the 24-month visit.
Written by Elizabeth Tsikkos