Dazed and Confused

A year into our personal journey through the autism experience, I find myself constantly confronted with the never-ending issue of cure vs. acceptance. As a non-autistic parent, it seems to be a road covered by potholes and pitfalls and the fear of misstep is ever present. I often find myself lost, afraid that I will take a wrong turn and injure or lead my child astray...or fail to bring him even near our intended destination of independance and self-advocacy.

I follow discussion groups but fear to join in, because of the anger or pain caused by a simple choice of words. The wrong language seems to cause harm to the autistic community (or is that "community with autism"?), although I don't think that the issue is intent related, in most cases. We are often scared and sometimes angry and we seek that universal language that is acceptable to all and harms none, but it does not exist.

I love my son, autistic or not, and I accept him for who he is. I would never want to change his nature, but I strive everyday to help him connect and communicate with the world around him. I need to know that if there is something I can do to make his life easier, I have at least tried. I need to know that if there is something physical that can be healed, I have at least tried. I need to know that if there is a better way to help him communicate, I have at least tried.

But, having listened to what so many adults with autism (or is that "autistic adults") have to say, I fear that my child will someday view my attempts to help as judgements of his inadequacy. This is not how I feel, and it breaks my heart that so many people feel that the community around them sends this message.

There is so much anger surrounding the issues of environment vs. genetics among the autism (and autistic) community, as well. Everyone is so busy arguing about the causes of autism and whether or not money is best spent on research or education and services. Personally, I think it is obvious that both are necessary endeavors. Researching the causes of autism does not have to end in eugenics. A better understanding of autism can be beneficial to all of us...parent, educator and autistic (person with autism) alike. And, the need for services is obvious. Learning about the causes of autism does little for existing autistics ("...") in the here and now. We need it all, it does not have to be either/or.

If we could all stop the personal attacks and realize that everyone is trying to do their best to help their loved ones or themselves (well, almost everyone), then we would waste a lot less of our energy battling each other and have more for helping our families. People need to be less worried about the semantics, and more concerned about the intent behind the words. If the intent is loving and helpful, then we should all get past the missuse of a word.

I am admittedly new to this journey, and I realize that I lack the personal perspective of autism, but I think I will save my strength for battling the school districts and insurance companies. I do not have the time or energy to fight with other travellers about the appropriate path. I welcome input and advice reading my map, but I cannot stop to indulge myself in road rage. My son and I have places to go and people to see...but I may be the only one making eye contact.

Kristie