When my child was younger, everything seemed so hard. He didn't hold a bottle, sit up, walk or talk on the pediatrician's timeline. We did physical therapy, occupational therapy and speech therapy. I asked every provider I could, "Why does he repeat phrases?" "Why does he like playing with doors, but not toys? I asked, "Could it be autism? And they said no.
I was trying to help him eat. Why was eating hard for him? Why did he refuse solid foods? Why would he eat one brand of pureed green beans, but not another? Why did he never ask for food? People said he would eat if he was hungry enough. They said I was spoiling him.
I was trying to help him sleep. Why did he wake up terrified? Why couldn't he sleep? All the parenting experts told me I was doing it wrong. They said I shouldn't rock him, pick up him up or co-sleep. They said I was reinforcing poor sleep habits. They said I caused his anxiety.
I was trying so hard. And everywhere I turned, I heard that I was doing it wrong.
That is the landscape of parenting an autistic child, a child who is misunderstood, mislabeled and mistreated. When society doesn't understand the reasons behind behavior, it's the child's fault. And it's the parent's fault. We get used to people not believing our experience, finding little help and feeling like we have failed our child.
That landscape needs to change.
It is not parents who are failing. We didn't create the model of autism that says they are Not Normal and must learn to be Normal. We didn't create a developmental timeline that doesn't allow for variations for those children that just need more time. We didn't look at the outside behavior and ignore the inside neurology.