Last night, at the Autumn Evening for Autism, a mom talked about her emotional journey from denial to acceptance for her son's diagnosis. She said that when they were told that her son had autism, she immediately suspected bias on the part of the doctor (the school board had arranged for the assessment) and decided to leave the school rather than subject her child to the label.
As more and more problems raised their head, it became harder to stay in denial. She explained that she was, by turns, angry and sad. She would be angry at other children and other families, she would be angry at her own child, she would be angry at the schools, at the doctors, at anyone involved because this wasn't how her life was supposed to be. And then she would be sad and upset because this wasn't how her life was supposed to be and she had no idea how to fix it.
As they finally got some tools to work with, she came around to acceptance. Yes, her son was autistic. Yes, he needed special help. But that didn't have to mean the rest of the family living in chaos and fear. Once he got the help he needed, things began to improve.
This is where I feel she left out the final step: exhaustion. Once I accepted my sons' diagnosis, it made things very clear. I needed to do what was necessary and I needed to do it over and over and over and over if I wanted any chance of success. I no longer had the luxury of tackling things later. The list of behaviours and goals to work on was too long to allow for downtime.
It bothers me when it is implied that autism can be "fixed". Give a parent A, B and C and the problem is over. It's never really over. The right tools make a huge improvement and I don't want to dismiss or diminish that, but it's more like being given the right tools to build a house when you're standing in front of a pile of lumber and concrete mix. Without the tools, everything is impossible. With the tools, you still have a whole lot of work.