I'm sure that all of us are familiar with the term "advocate," which many people in my social network use as titles for themselves and which appears on their social networking profiles. A number even include this title in their screennames. But many of you reading this may not be as familiar with the term and title of "self-advocate." What is that? I have been aware of this term and title for many years and its is usually used in the general disability community. This term was coined because, by its very nature, have a disability (s) means that one will find oneself in situations where one will need to advocate for one's needs and seek accommodations and understanding for them in order to live in society and with one's family. So, an advocate is one who speaks on behalf of others who do not have a voice to speak up for themselves, and a self-advocate is one who has special needs or disabilities that may need accommodation or understanding and who needs to speak up in his or her own behalf, to make this happen. Self-advocacy as a concept or title did not exist decades ago, when many people with disabilities were insitutionalized or where many with special needs were segregated in special education classes and then sent to live at home with their families, or worse. Out of sight, out of mind. But the concept of self-advocacy has changed that.
Currently, many in the autism community are stirred up because of scheduled hearings this upcoming Thursday that are to focus on autism. I learned about thse pending hearings last Thursday, on Thanksgiving Day when I was scrolling on Facebook. Since then, I found the webpage for how people can find their US Representatives and contact them. Initially, no autistic persons were invited and there was much uproar over this. The disability community has a slogan, "Nothing About Us Without Us." This means that no one should be making any decisions for a self-advocate that does not take into consideration what the person thinks or wants. I have been spending much time sharing the link to the House of Representatives webpage that links to their websites and their information, including their contact information. I have been sharing with people the link to my Change.org petition and asking people to share with their Representatives this petition and its mission, to obtain funds for underserved low-income children and all adults with suspected or diagnosed Autism Spectrum Disorders (ASDs). I have granted that research has it role, in learning better ways to diagnose autism than we have at present, and to improve the quality of services. But I have been stressing that people ask their Representatives to examine my petition and its mission and to consider mentioning my petition and its mission at the hearing.
I do have fear about the outcome of these pending autism hearings this Thursday. I was delighted to learn from a Facebook post from a ASD self-advocacy group, that the CEO of that nonprofit in question, had been invited to the hearing. Also, the President of another ASD self-advocacy nonprofit also has been invited to the pending Thursday autism hearings. Since then, I have been scrambling to get the attention of the "big voices" in the autism community to examine my petition and to consider mentioning it at the hearings this upcoming Thursday. This unfortunately has not happened and my petition is unlikely to be mentioned at all by the "big voices" in the autism community who have been invited to the pending autism hearing. I know that other nonprofits, which favor research and "finding cures" for autism, are also being invited and have an equal right to their say at these pending hearings. My fear is that whatever happens this upcoming Thursday, at 2:00 PM, that the funds that are written in my petition letter may be allocated to things other than the badly needed services for those children of low-income families, and all adults with ASDs, that are not available now to these underserved persons. I fear that my petition's mission and goal may be hindered and that too many funds will go to research.
As far as my petition goes, yesterday several people in the autism community have taken it upon themselves to try to convince me what is wrong with my petition. One person has told me that it is "poorly written." When I challenged him to tell me what he meant by ths statement, he declared that my petition calls for people with "suspected ASDs" to have access to services and that this provision would open wide the door to many to "abuse the system." In vain, I sought to share with this person how the very process of seeking an ASD diagnosis is tedious, requiring much paperwork and "jumping through hoops" that should discourage most persons who would "abuse the system." I apparently wasted my time as others joined this person in ranting about scammers "abusing the system" and that "petitions are useless." I agreed that there is potential for abuse in making services available to those awaiting a diagnosis of ASD, just as there is with any good thing. I declared: "Every person with a diagnosed ASD at one time had a suspected ASD." All to no avail. At this time, I an unable to have any illusions that most peope in thi community appreciate, much less enthusiastically support, my efforts to try to obtain funds for the many underserved low-income children and all adults, with suspected or diagnosed ASDs. After this Thursday, I may be forced to re-think my entire petition and may need to make more painful revisions and do more research. As a Christian, I realize that whatever happens is in God's hands and that I have no control over the response of others whom I have been trying to appeal to.
This brings me to my point of why people with "suspected ASDs" even though there is a chance of abuse of such a provision, should be covered in services for those with ASDs. For if one has challenges in relating to other people and in thinking as they do but has no diagnosis to "label" these challenges, how can he or she speak up effectively? How can one with a condition that is there but is not confirmed with an official diagnosis, have the confidence to tell people what he or she needs if there is no system by which to identify it? In the free world, we live in cultures where documentation is respected and which bolsters credibility. And as I pointed out to the people in the autism group who were trying to discredit my petition, all of those who have an officially disagnosed ASD, at one point had a "suspected ASD." This obviously holds true of every person, whatever his or her age. So withholding services from those who "just have suspected ASDs" does not make sense. If those who are lucky enough to have a correct diagnosis were treated in this way when their conditions were "just suspected," they would never have been diagnosed. This has always been my problem and challenge. I cannot tell you of the countless times and situations where a correct diagnosis would have probably gotten me understanding and opportunties and accommodations! This holds true not only in my childhood but also in my adulthood, and in my family and my community. But so far, when questions have been asked of my family about me or to me, there was no good explanation for my challenges. "Oh that is just the way she is," has always been a typical "apology" for me. At times, I cannot help but feel a pang of jealousy for those in the autism community who have the validation and understanding of an official diagnosis.
I would like to make an appeal to those of you who are reading this. I realize that a number of you may already be familiar with what I am about to ask and forgive me for what will be to you a repeat appeal. I would like my readers who live in the US to contact your Representatives, if at all able and this is very urgent as the autism hearings are this upcoming Thursday at 2:00 PM. I appeal to you to share with your Representative the importance of these hearings and to consider attending. I'm asking you to share with your Representative my petition with the link http://tiny.cc/mrsahw, and ask your Representative to examine this petition and to consider mentioning the petition and its mission at the hearing. Your letter need not be long and should be respectful, concise and to the point. You can find your Representative here: http://www.house.gov/representatives/find. You letter can be composed much like this sample letter:
Dear-----------------------------,
I am a concerned citizen and (you can fill in about your situation in relation to autism or your desire to show your support). I have learned about the pending autism hearings this Thursday at 2:00 PM. I understand that among the topics to be discussed, what will be covered is where autism funds should be allocated. Research has its role and some funds should go for it. But my primary concern is that most funds be allocated to services for underserved persons. These include those with suspected or diagnosed ASDs who come from low income families who cannot pay for services, or who are adults. There is a Change.org petition at http://tiny.cc/mrsahw and I invite you to examine it and its mission and goal. I ask you that, if you are able to, to attend the autism House hearings this Thursday, and to mention this Change.org petition, its mission and its goal at the hearings. If you are unable to attend the hearings, please examine the petition and send it to other House Members who may be able to attend the hearings. Your service and support mean very much to me and to all persons with ASDs.
Thank you very much for your service to our country
Most Respectfully,
(Your Name)
You can search for your Representative by zip code. Like me, you may get more than one Representative and you will be asked to either search by using a map of your area or by supplying the last four digits of your zip code. I did not have the option of emailing my Representative but my letter to him had to be faxed. In that case, I do not know what to tell you. But most of you should be able to find the option to email your Representatives. If you truly do not have time or do not feel that you are able to compose a concise, to-the-point letter to your Representative, I hope that you will share this with others or show your support in other ways. This is a very urgent matter which can affect the futures of many people, including future generations.
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