Monday, 25 February 2013

Autistics Should: How do I learn what autism is, anyway?

I have been on this road for about two years now. Oh, I felt there was something going on with the Monkey long before that, but the process really started moving along when he turned three, with little or no language, no interaction with other kids, odd play, unusual reactions. The process of referral, assessment, diagnosis, referral for funding, applications, and so on and so forth is ongoing, but the bulk of it was completed more than a year ago now.
So I have made an effort to learn what I need to effectively parent this boy. I love him more than I thought I could love anyone, and I want everything for him. I have talked to and read blogs and books by other parents of autistic and special needs kids. I have talked to and read experts in the fields of education, medicine, psychology and therapies. I have talked to and read the blogs and books of autistics of all ages, from the 3-5 year olds in the Monkey's classes and soccer team to a five year old novelist (yep, five and writing books, though as yet unpublished), to teenaged bloggers and students, to adults who have been through the system or have been left undiagnosed until adulthood.
I have been educated, confused, enlightened, appalled, insulted, ashamed, disturbed and frustrated with the materials that are out there. Blogs and web based information have been both my best sources and some of the most uneven and terrifying stuff I have read. There is a "flash blog" going on right now because someone checking the search engine on Google found that the auto-fill for most searches for autistics came up like this:

This was my result. I felt queasy when I saw it. What if I was a parent trying to understand my child? Or a young person or adult trying to find information on a friend or family member's condition? Or, and this is the most terrible of all, what if I were a person looking for some information or support for my own diagnosis, and this was the crap that they were given to deal with?
I know more about autism and autistics now than I knew when I started. I can look at this stuff and say "NO". Not everyone can do that so easily. It cuts to the quick because the first place people often go for information is the internet. It might not be the best place to find answers, but it is fast, anonymous and has a huge database of information and misinformation to choose from. Today I am spending some time entering some more positive searches into that bar, in the hopes that when someone types "autism" or "autistic" looking for a way to understand, they are not assaulted with hateful, negative statements.  I hope you will too. Some examples: Autistics should be respected. Autism is not an illness. Autistics are good people. Autistics are family, friends, neighbors. Autistics should be heard. Autistics should be listened to. Autistics can love. Autistics should be loved.
That's a start.

* Note: if you put the identical search too many times from the same computer too fast, Google counts it as spam, so try a bunch, and do some every day, until we can be sure of some positive results.

**Here is the masterlist of blog posts for the flashblog