I correspond with a neuroscientist about autism. He asks me questions about things regarding autistic behavior to help explain what we think on the inside. I find many interpretations are incorrect but few experts ask me or people like me to explain. I guess it is hard because we often can’t communicate so they have to get information from doing trial and error or interviewing Asperger’s people. I feel both have led researchers astray.
Observations may show the result but miss the cause. Asperger’s is also a trial. It isn’t my trial, however. Recently I was interviewed by a filmmaker with Asperger’s. He was surprised at every answer I gave. This tells me that autism like mine and Asperger’s like his are fundamentally different in so many ways, and if researchers turn to people like him to explain the way people like me act they may interpret my behavior for his condition.
I am so grateful to be part of the solution now and to help researchers think differently about why we autistic non-verbal people act as we do. The worst frustration is to be misunderstood and I hope my book will shed light on what autism is for many of us.
I don’t know if this is just about differences between autism and Asperger’s syndrome or if it is really about the differences between individuals. Sometimes it helps to draw parallels and categorize, but we must always remember that every single individual is different. We have to be careful not to make too many generalizations regarding any group of people.
Many generalizations may be correct and helpful, but there is always room for variation. That’s what makes people so fascinating–the endless capacity for variation coupled with the many similarities that we are also bound to have.
It must be frustrating to have people make assumptions about you based on what they have observed in someone else, especially if you have trouble communicating with them that they are incorrect. This is a real catch 22 because most humans want to be understood, but the method we use to understand people is often through observation, categorization, and generalization of others. We want to be understood, but there is great risk of being misunderstood in the process.
I am thankful for you, Ido, and for your ability and will to communicate and share who you are with others. Your insight is invaluable.