This open note is addressed to all of you who have loved ones who have suspected or diagnosed Autism Spectrum Disorders (ASDs). This holds true whether you are a parent, grandparent, sibling, aunt, uncle, spouse, former spouse, or are in any other way related to a person with suspected or diagnosed autism. I'm writing this to all those among you who have suspected or diagnosed ASDs. I'm writing this to all of you who work with those with ASDs, whether you are paid or not. I'm writing this to those among you who are friends of those with suspected or diagnosed ASDs. I'm writing this to all of you who advocate for those with ASDs, including individuals, groups and organizations. And, finally, this letter is addressed to anyone anywhere who wants to learn more about and support those of us who are touched in any way by autism.
Many of you are in my social networks in one or both of my accounts on Facebook. A growing number of you are being added to my one or more of my three Twitter accounts. I belong to many of your groups. A number of you do not use social networks, as far as I know, but I have met you in person because of my daughter who is diagnosed with an ASD. A number of you have dealt with me over the phone because I'm seeking an ASD screening for myself and I know I will, God willing, be meeting more of you in the future when I'm able to access this screening. I know that many of you have seen my posts about my autism petition, which I have launched on Change.org. You may have signed it where it was launched On Causes. Many of you have joined one or both of the Causes that I lead (or help lead) at this Facebook application. I am thankful to all of you who have added youselves to one or more of my causes. I'm thankful to those among you who have signed my autism petition at Change.org and/or launched at Causes.
However, I must say that I have been disappointed and even feel betrayed and angered, by those of you whom I have shared of myself and my petition with, but who have not shown support. In May, when I launched my petition on Change.org, I was hoping to leverage support from certain high-profile or respected, well-known persons in the autism community whose support and voices could have greatly multiplied my efforts beyond what I could have done on my own. I had one person in mind, who maintains two autism blogspots. One of these blogspots is ranked among the Top 15 autism blogspots and this person has written memoirs about her autism journey. I have written a post for this person's blogspot. So, I emailed this person, two or three separate times, giving details about my petition and tried to make the case for her signature and her support. I waited and waited for this person to respond. No response. I posted on two of my Facebook pages, giving the person's name and email address (which is published in her info tab and on her blogs) and asked people to "flood" her inbox with shares of my petition and with appeals to support it and to help promote it. This person has promoted petitions on her page and I was longing for her to do this for mine. After all, this was for autism and what problem could she have with my petition?
This person got wind of my efforts to rally people to help me leverage her support by contacting her. This time, I did hear from this person! But it was not to support me in any way but to call me out for what this person saw as harassment and invasion of her privacy. Angrily, this person sent me a curt message ordering me to promptly remove ALL my posts with her name and contact information OR she would report me to Facebook. As I had copied and pasted my offending posts over and over, on two Facebook pages and on my profiles, I frantically tried to delete it all before this angry person could take any action that could hinder my advocacy. This person sent me one angry email after anoth demanding that I PROMPTLY delete my offending posts and angrily gave me a date by which I had to remove everything. My last email from her told me that she had reported me and curtly stated: "I never want to get email from you again." If you reading this and are this person, I know you will recognize yourself here. And yes, I have signed your petition which you launched on Change.org after I launched mine AND which has gathered many many more signatures than mine has. I did that because I agreed with the mission of your petition. I do not expect that you will feel any remorse for the hurt that you have caused me and you no doubt still believe that I owe you an apology. Maybe I do. I should maybe have just given people your page link and told them to look up your contact information on your Info tab. But I cannot even contact you now because you have ordered me not to contact you again! So if you are reading this, I apologize for my direct approach in seeking your support and my hope is that somehow you will change your mind, support me and my petition. But if not, my petition's success can happen without you.
Recently, I was challenged by one of you in a Facebook group, to put out a survey to autistic people and to field your questions about what issues you could have with my petition. Therefore, I did this and I posted my survey question to a number of autism Facebook groups. I expected, at most, to be told that I needed to rewrite parts of my petition but I did not expect the response I got later. I got a Facebook notification, some time later, with the word diagnosis. The person was responding the my copied and pasted status update (wth my petition link) where I was venting my frustration over not getting petition signatures in a 24 hour period and where I capitalized the word UNACCEPTABLE for emphasis. I visited this group page and the person posted: "You need to go out and get a diagnosis of an ASD." I replied to this post, mentioning my situation and my inability to access an ASD screening with an affordable, qualified professional. The person replied: "Then you need to remove your own story and your own information from the petition and deal in facts. The fact is that your daughter is diagnosed and her future is involved. Mentioning yourself and your story undermines this petition as your story is based on speculation, not fact." If you are reading this and you made that appeal to me to get an official diagnosis for more credibility, know that your words greatly crushed me. You may have meant very well and your heart may be in the right place, but when I'm told that I cannot share my story without an official diagnosis, I feel invalidated, suppresssed, violated and betrayed. But that is not all. In that same thread where you appealed to me to "go get an official dignosis," another person accused me of being pushy and a bully because I capitalized the words UNACCEPTABLE for emphasis when I was venting about lack of support for my petition. This person got backing from another person in the words, "That is what I have been trying to tell her." That did it for me! Feeling unvalued, unembraced and unappreciated, I left the group in question. Maybe your very ASD makes it hard for you to understand others' viewpoints which is why you did not "get" mine. Whatever the case is, if you are reading this and may be in that group, know that I'm saddened that your very disability may keep you from exhibiting the "theory of mind" that you need, to some degree at least, to support a petition that you may not fully understand or agree with.
More recently, I had joined an autism group because I am very sympathetic to the stated mission of the group. The administrator (admin) had stringent rules for his group and, as requested, I pulled up the link to review the rules. While I know that rules have to be created and enforced to protect members and to avoid abuses, I thought some of the rules were excessive and heavy-handed. I posted something about a nonprofit having started a petition in line with the stated mission of this group. The admin posted: "Lisa, anyone can start a petition. The real heros are those who actually get out and organize or participate in protests to make change." I posted about my situation and ended with, "I'm doing all I can for autism." The admin, apparently unconvinced, posted, "So you say, Lisa." This in itself, to me, was no big deal. The following day, in a comment thread in a discussion in this group, I shared my Facebook group for my petition, the link and I invited the admin to join. Then, seconds later after I left the page, I got a message from the admin with a warning that I had violated one of his rules! Knowing that he was no doubt talking about my shared group and sensing that this group was not a good match with what I see as rules that go too far, I left this group. The admin got wind of this but did not leave it at that but pursued me and challenged me. He accused me of overreacting to being "called out" for a "minor infraction" and blasted me for childishness, pettiness, and playing the victim. I reponded and our emails went back and forth until the following morning. After threatening to block me if I could not "hold an ADULT CONVERSATION" with him, he threatened to block me and forget all about me. I tried to reason with him, all to no avail. I was blocked anyway. I got another message from him, with his profile no longer linked and his pic now invisible to me. If you are the admin of this group and are reading this, know that I'm sorry that I was blocked but I'm not letting your cowardly and childish act deter me from my mission.
By the way, I wonder if many of you, who know about my petition but are not supporting it, even understand my petition's mission? I have edited it over and over in the hope that no one can get confused. I have tried, to the best of my ability, to remove all barriers to understanding it or supporting it. What is it about my petition that you don't understand or do not support? FYI: The mission of my petition is to gain comprehensive coverage for all persons wirh autism, regardless of age, income, race or walk of life. I'm calling for the US Congress and the US President to not only appropriate (fully fund) the 2011 Combating Autism Re-Authorization Act, but to re-allocate many of its $$$ set apart for research, to instead fund services for all children with suspected or diagnosed autism and in all 50 states. I'm calling for the US Congress and the US President to renew additional expired 2012 $$$ and to renew thse funds and to send them to all 50 states so that adults with autism can have access to covered services. So, it hurts and angers me that so many of you are choosing not to add your voices to this effort. This is about you and is meant to benefit you but I know that you have your own reasons for not supporting this petition. I just cannot understand thse reasons. Have you been asked too often to sign petitions? Have you been "burned" in signing them?
Yesterday, I learned that the US House is to hold autism hearings on November 29 but no autistic person has been invited to this meeting. This is unacceptable, just as unacceptable as the hearings on contraception where women were not allowed to add their voices. I fully agree with the slogan: "Nothing about us without us." My deepest fear is that the 2011 Combating Autism Re-Authorization Act (CARA) will be discussed and that the $$$ will go toward research, nullifying the very mission of my petition, to get most of those very $$$ to provide comprehensive services for all children with autism, in all 50 states, whose families cannot afford to pay for services! My petition needs to be mentioned at these hearings! But how can that happen? I need to reach the person (s) who will be at the November 29 autism hearing and I do not know who will be there. The one possible way to help make this happen is to contact your representative and to urge him or her to attend these hearing. I appeal to you to tell your Representative about my petition, sharing with him or her my link which is: http://tiny.cc/mrsahw. I'm sharing with you the link to the website where you should easily be able to find your Representative by your zip code, access his or her website and contact this person. This is important and may be critical. Research has its place and is important, but even more important are comprehensive services for all persons with autism, regardless of their ability to pay or their age. And if thse $$$ end up going where planned, my petition's stated mission may become null and void!
http://www.house.gov/representatives/find
This is the official website where you should easily be able to access your own Representative by entering your zip code at the upper search bar at the upper right of the home page. You should be able to find your Representative's website and contact information to send an email or call him or her, sharing my petition and its URL link: http://tiny.cc/mrsahw.
Thank you for your support!
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