April is Autism Awareness Month. April 2nd is World Autism Awareness Day.
Over my years of blogging my views on this have changed. The first year I was excited. I couldn't wait to celebrate my son, to share him with the world and for them to see how wonderful he is. I thought I could make a difference, change the world in 30 days.
The second year, I was discouraged but determined. Maybe my efforts online were wasted, raising awareness among the already very much aware because no one outside of our world really cares. It doesn't effect you until you live it, but I thought I could raise awareness in the real world, I just had to figure out what to do. and I saw how little the world outside of the online autism community really cares.
This year, I'm just pissed off.
I'm sitting here watching the same arguments that I watch every year- light it up blue vs the rainbow, whether or not the puzzle piece should be the symbol of autism, etc. Superficial bullcrap that means absolutely nothing, that accomplishes absolutely nothing. Every year we have this same issue and I have to shake my head at the absurdity of taking three entire meetings just to write a mission statement while never discussing the reason we're here. When are we going to get past the unimportant details and get to the reason we need awareness?
Bill McClellan wrote an article in the St Louis Post Dispatch about a woman named Carla and her parents and their difficulties in finding a place for Carla to go after graduation. Now, here's a place that takes the high-functioning vs low functioning argument and explains why there is a difference and why that difference is important. There are work opportunities for the higher functioning adults- sheltered workshops and such, but the county decided our lower functioning- or more profoundly affected- individuals don't really matter, they are not worth the investment. Now, Alex is only 11 but this matters to me a lot because, in addition to the young adults who are transitioning out of school every year with nowhere to go, Alex will be there soon. If there is no money today, how is that going to change tomorrow unless we do something now?
I know you are all familiar with Avonte Oquendo, the teen who wandered away from his school and was later partially found in a nearby river. I know you are all familiar with Mikaela Lynch, the 9 year old who wandered away from her home and was later found in a nearby creek. I know you are familiar with these children and so many more, more than I can possibly name. Every week I see new notices of autistic children who are missing from all over the country in my newsfeed. Every week I see parents who are devastated, begging for help.
Every week I see new stories of school abuse. The most recent one that comes to mind is Andrew Ashline. When it gets to the point that you aren't phased by stories about a teacher slapping an autistic child in the back of her head because you've heard worse more frequently than to make it common, there's a problem.
Every week there are stories of horrific bulling. My brother recently shared a story with me that I had been avoiding about 2 teen girls terrorizing and torturing an autistic boy because he was horrified by the story. All I can do is shake my head because our children face this every day. It's not always quite so obvious, but it's always horrific. Blue is one of many children and teens with autism who go to school and have to figure out how to deal with daily harassment on his own because the zero tolerance policy is bullshit. Our children are hurting, a lot more than you would expect are suicidal. I hear the stories and it breaks my heart. All they want is to be safe.
Our children are being murdered by parents who just can't take it anymore or parents who are just sick. I know you know of Alex Spourdalakis and Issy Stapleton. They are just two of way too damned many. The ASAN says it best in their thank you for the support in the March 1st day of mourning.
They are being dropped off and abandoned because their parents can't get them the help they need or get the help they need. The most talked about was Nebraska's Safe Haven Law. As of November of 2008, 34 children had been abandoned. All but 3 of the first 30 had previously had mental health care. On November 21, 2008, a bill was signed by Governor Heineman to limit the age of a child who a person can drop off at a hospital and not be prosecuted
to the age of 30 days or younger. In 2011, 10 year old Benjamin was left to wander the hospital emergency room. In 2012, an Illinois woman was abandoned in Tennessee. Again, these are only a few of the many.
The schools don't want to help us. There are so many stories about fighting for services, fighting for a diagnosis, fighting for an adequate education that I couldn't possibly link them.
The organizations that are set up to help don't want to help us. The system is overwhelmed. Everyone in the system is stressed. There's not enough money. The excuses go on and on and everyone is saying we're doing everything we can do, there's nothing more that can be done.
When are we going to stop talking about how to raise awareness and actually do something that will help our children and adults?