When I heard about Communication Shutdown, which is a simulation for those without Autism Spectrum Disorders to understand the isolation felt by those who are, I slightly chuckled inside. Autism is a difficult condition to wrap your head around no matter who you are. Even those of us on the Spectrum are often without the words to describe what it truly means to be Autistic. And while those who have more ‘normal’ manifestations of empathy have the greatest of intentions, I do feel the movement and subsequent donations are quite misguided. So for today, I want to take a moment to introduce you to some amazing people, movements, and organizations who exemplify why we’ve chosen ASDay.
My son, Daniel, is 6 years old. He did not start to speak until he was nearly 5 years old. He struggles with it to this day. If he doesn’t get enough sleep, he loses his ability to create even 5 word sentences. In school, they use an AlphaSmart for him for written communication, because like most children with ASDs, he has poor fine motor skills. But this device can be used for much more than written communication. It has the technology available to serve as a speaking voice for nonverbal students as well. This versatile word processing unit is roughly $200 each. Our school system is quite lucky that it’s RTI (right to intervention), but in other poorer districts, this is Assistive Technology where the child must be evaluated to gain access to. These devices and other much more expensive models, while archaic, are live lines for students who cannot communicate.
More than that, since Daniel is unable to speak clearly to where everyone can understand him, he’s not able to participate with most family members. Any parent knows how isolating this is. Instead, we have given him a Facebook account which we closely monitor. This allows him to play games with his cousins, his aunts and uncles and grandparents. It gives everyone the excitement of being able to see how much he has grown. And as he’s able to type more, communicate with him. I don’t typically talk about Daniel as much since this site is dedicated to Autistic parent concerns, but he is truly an amazing boy who would not be where he is without technology.
Carly Fleischmann‘s story is pretty well known at this point, but it doesn’t hurt to go over it again. Her parents thought she was unable to communicate or understand what was said to her. Through her life until her teen years, she had no voice. Her computer gave her a voice and what she’s had to say is the same thing we verbal Autistics have been saying all along.
“After my story was played I kept on getting lots of emails from moms, dads, kids and people from different countries asking me all sorts of questions about autism. I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.” -Carly Fleischmann
This isn’t meant as a “Ha! Told you so!” I believe without a doubt that most people assume because we can speak, we don’t experience the world similarly. Our ability to talk just means that the message in our heads can work with other places within our brain to control the muscles for the sound to come out. So I implore you if you have not to see Carly’s story, and if you have, look at it again. I always catch something new.
Despite her appearance, Amanda Baggs, in my opinion, has to be the leading pioneer when it comes to using social media to actively show her best interpretation of HER Autism. I admire her for constantly making clear that there is no high or low functioning. I first “met” Ms. Baggs in 2007 when my Daniel was first diagnosed with Autism, before I knew what it was, and before I knew I was on the Spectrum myself. It never occurred to me that she was such a pioneer in those days. All I knew is I agreed with everything she said. On a website forum full of parents of Autistic children, she stood up and made her voice heard.
It was through her that I first found out about the Neurodiversity movement. And while I held their core values to be true long before I had ever heard of it, it just made me realize that I was not the only one to think these things. It was in her words that made me realize what I wanted for my Daniel. I simply wanted him to be happy. So we have worked tirelessly these past 3.5 yrs to make him happy. And anytime that we tried an intervention that made him upset, we stopped it. Because I didn’t want, nor do I now, him to look back and see the abuse these therapies put them through. What Amanda Baggs says helps in ways I don’t think she ever intended. I don’t see her as a “window” to my children’s brains, thoughts, and feelings. But with her words, and those of others, I have come to find what works for myself and my family to keep us moving forward, independent as we can be and HAPPY.
Ari Ne’eman exemplifies what it means to work hard to get to where you’re at. I know he’s an easy person to turn to and say “See what we can accomplish!” He has done so much in his short 22 years and 10 months. I consider him a close friend and confidant as he will listen and offer to help in any way he can. That is completely amazing to me considering his full plate. I have gone over what he has done before, but just in case you’ve not been to my blog before or have forgotten.
- President of the Autistic Self Advocacy Network
- First Autistic Adult on the National Council on Disabilities
- Board member to the Interagency Autism Coordinating Committee of the Department of Health and Human Services
- Board member of TASH, formerly known as The Association for Persons with Severe Handicaps
- Graduate from the University of Maryland-Baltimore County with a degree in Political Science
Sharon daVanport to me is first and foremost a mother, to her children, but also to the many women and girls who find themselves on the Autism Spectrum. Her work started with the Asperger Women Association, but after she saw more and more events happening in the larger Autism community started the Autism Women’s Network. In the short year since they were founded, they have reached out to hundreds of women on the Autism Spectrum, as well as to hundreds more parents of Autistic girls. By bringing awareness to the sexual, physical and mental abuse that many suffer from in silence; creating a mentoring program for those new to the diagnosis; and even reaching top numbers on the Pepsi Refresh Project (currently at 26 on this last day of October voting!), Sharon and AWN have truly created a community that I truly believe is making a difference. My belief is with their efforts, they will help turn the tide into helping the many women suffering from misdiagnosis to come to their true diagnosis. As we all know, knowing what’s different is half the battle.
While I know these are the known heroes of the Autistic culture, and that there are many more who I missed, I believe all of these people show what true communication is about. It’s not about who can speak, or not. It’s not about who can live without social networking. It’s about getting your message out there. Whether it be for your family, friends and loved ones; for those who have no physical voice; to break barriers; to change the tide; or to give hope, the place it starts is with communicating. It’s not a matter of so called functioning levels, or whether or not one can speak, it’s about letting our voices be heard. And so my hope for today, tomorrow and the rest of my life, is that our “voices” will be heard.