Right now I feel great about myself, but there are so many times when I feel like crap because I’ve done something wrong, and I’m getting yelled at for it. When it’s something any other 16 year old would get in trouble for, no biggie. But so often, it’s related to my autism. For example, when I repeat the word “Okay” over and over, and everyone is yelling at me to stop repeating, or when I cut an important piece of paper. These are times when I feel terrible about being autistic. I wish I could control these better and not piss everyone off.
It’s been explained to me that this where my anxiety/OCD and stims overlap, and that’s why they are trying to get me to stop; to lift the needle off the record, if you will, and form a different response to stress. But it’s so hard, and it also hurts my self-confidence. Very often, I want to yell back at people, “Is there anything I do right?” I am loved, but like all relationships, that love can be complicated. I hope that as I make my way in the world, I can get a better handle on my anxiety and allow myself a break from feeling crappy.
I hate people watching over my shoulder as I talk. I prefer that we have a conversation between us and not be eavesdropped upon.
I also hate when someone takes my letterboard and tries to talk to me. I know I make it look easy, but it takes training and patience. Grabbing my letterboard is akin to sitting in someone’s wheelchair or trying someone’s hearing aid.
Also, I hate it when someone tries to talk to me when my support person isn’t there. Really hard and unfair to me.
I hate when someone doesn’t want to have a conversation with me on the letterboard. It’s ableist to insist I talk to you verbally.
Check me out! I’m going to be in Disability Power PDX. How about that? I spent yesterday laid up with the worst stomach ache I’ve ever had, and today I found out I was selected to be in a disability rights group. Life is funny.
I’m pretty excited to be a part of it because I think this is exactly the time for disabled people to voice their concerns. We are under assault for needing supports that allow us to be independent. We are needing to convince others that we should be included in our communities. Not only are we having to take this advocacy to the streets, but we are having to take it to the courts, to the voting booth, and to the right people who will listen. I hope this advocacy will have the effect of bringing people together on issues of importance to people with disabilities, and not further divide us.
My hope is that something will change in the area of autism awareness in Portland. That I’m done with the Odd Fellows contest, but there continues to be publicity from it, is mindboggling. I’m hopeful that it stays positive and changes what people think about autism.
I’D LIKE TO RESPOND TO THIS ARTICLE (“AUTISTIC ADVOCATES CLASH WITH AUTISM PARENTS AT GOVERNMENT COMMITTEE MEETING”) BY SAYING THIS: NO ONE, AND I MEAN NO ONE, SHOULD BE TALKING ABOUT WHAT’S BEST FOR ME BESIDES ME. YES, MY PARENTS KNOW ME BEST IN THE WORLD, BUT THAT DOESN’T MEAN THEY KNOW BETTER. IT PERPLEXES ME THAT WE ARE HAVING THIS DEBATE STILL, AND PEOPLE DON’T SEE HOW LUDICROUS IT IS TO HAVE AN AUTISTIC GROUP REPRESENTED BY NON-AUTISTICS. IMAGINE THE NAACP REPRESENTED BY WHITES. RECALL THAT IMAGE OF A GROUP OF WHITE MEN SIGNING LEGISLATION LIMITING WOMEN’S BIRTH CONTROL… YET IT IS TOTALLY OKAY FOR MANY AUTISTICS TO BE AFFECTED BY THE WILL OF NT’S.
I SIMPLY SAY THIS: IF YOU WANT THE VIEWS OF NONVERBAL AUTISTICS TO BE HEARD, INVITE THEM TO THE TABLE. MAKE SURE THEY CAN ACCESS THE MEETING WITH THE SUPPORT THEY NEED. SEEK OUT AUTISTIC PEOPLE WHO ARE NONVERBAL, AND LISTEN TO WHAT THEY HAVE TO SAY. LET YOUR EXPERIENCE OF HOW YOU RAISED A PERSON WHO IS AUTISTIC BE SHADOWED BY THE AUTISTIC PERSON’S EXPERIENCE OF NOT FITTING IN A WORLD THAT THINKS HE IS BROKEN.
RIGHT NOW, THE BIGGEST HURDLES WE FACE ARE THE ATTITUDES OF COMMUNITY MEMBERS AND THE IMPOSED LIMITS OF PARENTS. LET YOURSELF ABSTAIN FROM THE PITY PARTY THAT SEEMS TO BE SO MUCH A PART OF THE AUTISM COMMUNITY, AND BELIEVE THAT YOUR CHILD WILL CONTINUE TO DEVELOP AND GAIN NEW SKILLS. MOST OF ALL, GIVE THEM THE CHANCE TO HAVE WHAT WE EACH ASPIRE TO: AN INDEPENDENT LIFE, LOVE, HOUSING THAT SUPPORTS THEIR VISION OF WHAT THEY WANT, A CHANCE TO WORK, MAKE A DECENT LIVING, AND FIND SATISFACTION IN THEIR DAILY LIFE. BESIDES THAT, THEY WANT TO BE ACCEPTED FOR WHO THEY ARE OR KNOW THAT IF THEY NEED SUPPORT, THEY CAN GET IT. FOR ME, THIS IS WHAT OUR RESEARCH DOLLARS SHOULD BE SPENT ON. GIVE AUTISTICS THE MAJORITY PLACE AT THE IACC, AND I GUARANTEE YOU WILL SEE THESE THINGS GET ADRESSED IN A WAY THAT MAKES SENSE FOR US.
NEVER LET SOMEONE TELL YOU THAT YOU CAN’T ACHIEVE THE IMPOSSIBLE. KEEP TRYING TO FIND THAT ONE PERSON WHO BELIEVES IN YOU AND THE VISION YOU HAVE FOR YOUR LIFE. IT MAY HAPPEN FAST, OR YOU MAY WAIT YEARS LIKE I DID. JUST KEEP BELIEVING IN YOURSELF.