In about a week it will be the official month that will be set aside for autism awareness and support. Online, I'm seeing calls to "light it up blue for autism awareness" to "go red for autism," and to "go gold for autism support." This goes on every April. And yet, we are still not getting any closer to seeing that awareness and/or support from larger society. We may be making limited progress, but not much. That's my observation and research. Who are all of those among us who are seeking awareness and/or support for ourselves or those in our lives who are on the spectrum of autism?
I'm addressing this to all us parents who have children or relatives with suspected or diagnosed Autism Spectrum Disorders (ASDs).
I'm addressing this to all of you who work with those who have suspected or diagnosed ASDs, whether as professionals or volunteers.
I'm addressing this to all of us who have suspected or diagnosed ASDs.
In my years after my daughter was diagnosed with an ASD, and I self-diagnosed myself with an ASD until I finally saw it become official, I have witnessed disturbing trends in our community. I have seen factions, wars, and much animosity, ill will, and even hate erupt in this community. I have experienced this hate myself. I have had "falling-outs" with other individuals in our community. I blame myself for being part of those "falling-outs," but I know that the other parties were, as I saw it, overreacting out of their own unresolved personal issues. Just the other day, a person in my community decided to publicly discredit and attack another person, also a fellow member of our community. This person's Facebook thread garnered many comments; people were rallying to this individual's side to provide support. This person devoted a blog post to the discrediting of this fellow ASD member. I suppressed the desire to read the blog, so as not to contribute to gossip. I do not know the story behind any of this or the other person's side of the story. But this is just one example of the hate that often comes out of the autism community. If you do not identify yourself as a person in this community because you have no connection with autism, you may learn some things. You may see that autism affects people intensely and people's different experiences with autism have produced factions. For we know factions exist in any people group.
Examples of my bad experiences with others with ASDs have been all online. Over two years ago, I started an autism petition on Change.org and I was seeking support for it. Aware that Change.org offers the "Embed" option for its users to use to put any Change.org petition on their blog or website, I sought this blogger's help. I posted appeals on my profile and on several Facebook pages to my friends or "fans." I shared the person's public email address that is at her blog. I asked people to share my petition with her and to "flood" her email inbox with appeals. I waited anxiously for this person to respond and to offer her support, hoping she would share my autism petition with her substantial following. When this person responded, it was not to show me any support! I received an angry email message demanding that I instantly remove every post containing her email address (which was public). This person accused me of harassment and invading her privacy. She kept up with her angry emails and flooded my inbox until I removed them. I found myself banned from her Facebook page. Another time a Facebook user with an ASD blocked me twice. The first time she blocked me was when I volunteered to share one of her posts at this blog over a year ago. My laptop was not working properly, so my copy and paste function was malfunctioning. Her piece was, I thought, unclear in spots and hard to follow so I reworded and rearranged some of her phrasing and sentences. When she expressed displeasure, I undertook to copy and paste. My copy/paste feature still was rather "off" and did not work well. After I showed my version to the person, she still expressed displeasure! Frustrated, I sent her this, "I tried!" Minutes later, I found I was blocked with her name showing up in black, her photo gone and her profile invisible to me. On my blog, she left an angry comment, "DELETE THIS NOW!!!!!!" This person "re-friended" me months later, but blocked me again after I had a falling-out with someone else who was assisting her then; I remain blocked to this day. A day ago, I learned that I have been banned from an autism page which I have "liked" and shared. My story for the website for the page was never published, either. My efforts to work things out with a manager of the page did not stop the ban, either. These are the deeply held beliefs about autism that our community cannot agree on, and we war with those who disagree with us. Autism is a disease that needs to be cured. Autism is a difference that needs to be accepted and celebrated. Vaccines have caused autism, or other environmental toxins. Genetics cause autism and vaccines are not to blame. ABA is a wonderful therapy that has helped many autistic children. ABA is a terrible form of abuse and hurts autistic children. Autistic behaviors should be changed or controlled so autistic people can live and function in society. Autistic behavior should be accepted and any effort to change it is a betrayal of the autistic person, or evil abuse. All the factions of our community feel deeply about these positions. There is nothing wrong with feeling deeply about positions and being vocal about them! We run into problems, though, when we expect others to agree with us and discredit them when they don't. Parents and relatives of autistic children often resent, distrust, or even hate ASD adults because they have encountered what they see as lack of support. They love their children very much but do not often, if their children have more severe challenges, see their children's autism as positive. Many of us adults with ASDs often dislike, distrust, and maybe even hate, parents of children with autism. Many ASD adults see these parents as "insulting autism" and "demeaning" ASD persons by calling for a cure or even working to change ASD children's behaviors through any therapy like ABA. From my observation and research, most of those who work with those with ASDs seem to lean toward the "cure" side rather than the "acceptance" side. Saddest of all, though, even people with ASDs who agree on "acceptance" or "cure" have been known to feud! I know this from experience!
Each faction in our community is entitled to believe what you want to believe. I may not believe that autism can be cured or that the bulk of money for it should go to research to "find the cure." But I fully respect any parent, person, or professional who does not like the challenges of autism and wants to see its demise. I may not see autism as a disease caused by vaccine or other environmental toxins. But I respect anyone's position on this, as vaccines and other toxins can indeed make us very ill if they are not administered correctly. I may not agree with all those who believe that autism is a terrible tragedy that needs to be mourned. But I can fully respect that families of those with more severe autism challenges suffer and view autism as the cause of their suffering, and see autism as something that should be eliminated. We are not entitled, however, to reject or withhold our support from those who disagree with us. This principle applies to those in the autism community who strongly disagree with us. We cry out for society to accept our autistic children, and to accept us as people with ASDs. We can see that we aren't getting closer to being embraced by society in general. Could it be that society is turned off by the wars and factions among us?
How can we expect society to accept us if we don't accept others in our community who disagree with us?
Wherever you stand on these issues, I hope you will support my autism petition.
Please sign my autism petition at SignOn.org.
Please sign my autism petition at Change.org.
No comments:
Post a Comment