I began this blog in April, 2010 as a document of what I thought would surely be our finding a cure for my daughter’s autistic neurology. At the time I did not question that this was a worthy goal and one I should be pursuing. At the time, all I could see were the things challenging her, making her life more difficult with no upside. She was, I thought, the victim of a neurology that caused her nothing but pain and suffering. It was not until I was confronted with the joys, things that I had witnessed right from the beginning of her life, but, after receiving her diagnosis then ignored and dismissed, that I began to appreciate the more complex truth about autism and what that might mean to her. I could not have imagined that four years later my daughter would be posting her profound insights about life, her neurology and the impact society has on her, not because we found a cure, but because we didn’t.
For those of you who have read this blog from the beginning, or poked around and read a post or two from those early days or those who’ve looked through the archives of the pieces published on Huffington Post, you will see a transformation. It is not a transformation of my daughter’s neurology as was once my goal, but a transformation of our thinking, and as a result the impact our thinking has had, not just on her self-esteem, but on our ideas about ourselves, individually and as a family. We had to examine and question our own neurology and the challenges we face as a result, before we were able to fully appreciate hers.
We do not take credit for who she is becoming. We cannot. My daughter is strong, stronger and wiser than I have any right to claim influence on. While it has certainly helped that we no longer fight against her neurology, but instead encourage, support and provide her with the help she needs to flourish, it would be wrong to suggest who she is and is becoming is all due to us. Had we not found people who believed completely in her, people who saw beneath the words she spoke, the way her body moved, had they not shown us and encouraged us to question our beliefs and set them aside, to look beyond what we thought we were seeing and what that meant, we would still be lost in the horror of what we once thought and were told “autism” meant.
This concept, that of helping an Autistic child flourish to be all they autistically can be, is counter to all that we non autistics are told and urged to believe. So much of the focus is on making our Autistic children behave and appear less autistic-like. Appearing non autistic is the emphasis and the fact that this comes at a price, is not often spoken of or even considered among the non autistic population. Many people see Autistic people, witness their inability to say what they feel and think, and believe there is nothing more to see. They come to conclusions, having witnessed the person’s movement, their facial expressions or lack of, and believe what they see and what they then conclude is the “truth”. Assumptions can create all kinds of misunderstandings that hurt a population who do not follow the unspoken rules of a majority.
(Trigger for abuse contained in links) Misunderstandings that then lead to abuse. Beliefs, like this and this are expressed and taken by many as fact, regardless of how misinformed, regardless of how shoddy the reporting, which further harm people and children, like my daughter. The cure I seek now is for our society. A cure for intolerance, sameness at any cost, and for those who seek to silence those who cannot speak with spoken language, but who have a great deal to say through the words they write, is what I dream of.
One of the many down sides of non autistic neurology is how we struggle mightily to blend in, to fit in at all and any cost. We strive to be better than, to keep up appearances, to cover our awful feelings of insecurity and discomfort with pretense and by controlling those around us. Some become obsessed with money and power and yet once they have both, they use it to further separate themselves. Where and what is the cure for that?
This is the journey I now find myself on. There are others farther ahead, I am doing my best to follow. There are many who learned all of this sooner than I did. There are some who will read this and because they have been on this road longer, will see how far I still have to go, but this is a trek, the best sort of trek, filled with discovery and beauty. Emma is leading the way now. I really am just trying my best to keep up, while remaining open to all that I still do not know, but am eager to learn.