Hope. A few days ago I wrote a post about how I cannot function without an infusion of hope. One of the most debilitating aspects for a parent with a diagnosis of autism for their child is that it comes with little, if any, hope. Without any prospect of hope we are faced with darkness, nothing but darkness.
There’s a saying people often repeat when speaking of autism. It is: “If you meet an autistic child you have met one autistic child.” Just as in the general population, no two children are alike, the same holds true for autistic children. When I go to Emma’s school I am reminded of just how different children on the autism spectrum are. I’ve met talkative, highly verbal children who have horrific sensory issues, which cause them to melt down in mid-sentence. I have had conversations with Asperger’s kids who verbally perseverate on a particular topic, but have a terrible time asking any questions of the person they are speaking to. I have met incredibly affectionate, non-verbal children who hug, hold hands and want to sit in my lap, the lap of a complete stranger. Show me an autistic child and I will have met that particular child.
When I see a documentary on an autistic child, now grown to full adulthood I find myself wondering if Emma will resemble them. It’s like picking some arbitrary person on the street and wondering if my almost eleven-year-old, neuro-typical son will resemble that person. I would never do that. Yet, I have to remind myself of the absurdity of this exercise and catch myself when I find myself doing it in regards to Emma. I am reminded of how much I want guarantees of her progress. I desperately want someone to show me a YouTube clip of Emma 10 years from now. I want a crystal ball that will tell me, if you do this, this and this, then she will be like this. And yet, at the same time, I know I don’t really want that.
I cling to the idea that we know very little. It gives me hope. For many people the opposite is true. But when it comes to autism the awareness I would like to see changed is how much we do not know. Autism is an enormous question mark. In fact that is the symbol that comes to mind when I think of it. There is tremendous hope in that question mark. It means the possibilities are endless.
For more on Emma’s journey through a childhood of autism go to: www.EmmasHopeBook.com