I am currently reading "Born on a Blue Day", which is the memoir of Daniel Tammet, who is a man with Asperger's and Savant Syndrome. A wonderful documentary was made about him in 2005, called Brainman, exploring his life and amazing talents. The man is truly inspirational and amazing. This is his official website.
At one point in the book he says that the way his mind works is to focus on details individually rather than putting the details together and focusing on the "big picture". He describes this as not making the connections between the dots in a connect-the-dots puzzle. The irony of this comparison is that his story is also a series of dots- details about his development in childhood, health issues, family history, etc, and the failure of anyone to connect those dots. Reading his story I was struck by how similar it is in so many ways to the stories of others with ASDs. The family history of health problems including mental health issues, frequent earaches in childhood leading to many rounds of antibiotics, followed by head banging and narrowing of the diet to milk, bread, and cereal. The list goes on. I am so tired of reading about families struggling under these circumstances and no one making any connections. I think the history of autism treatment makes it clear that if anyone is going to the connect the dots to solve the puzzle, it will be us, the families of those affected.
The "connecting the dots" analogy is a good one for what our role is as parents in all of this. Each expert has their dot- they study that dot, they look at it from top and bottom, and they come to believe that their dot IS the picture. The system of specialization that we have means that the specialist for dot #4 knows that one dot inside and out, but has never talked with those over at dot #3 or dot #5. The system is simply not set up for anyone to stand back and make connections. They will recommend OT for sensory problems, speech for language issues, special preschool for social issues, etc, but no one sees each of these as different expressions of the ONE underlying cause.
This is where the parents come in. We need to remember that while each specialist has a contribution to make- each dot is a necessary and important part of the big picture- each one is also limited in how they can help. They only have a piece of the whole to offer us. It may be a large piece, it may be a small piece, but no one outside of ourselves is going to put the pieces together into a whole. It is up to us to take what each has to offer and place it into the bigger picture.
