An Open Letter To the Autism Community

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!

"Tis the Season

The holidays are upon us in the free world and in less than three days, the USA will observe Thanksgiving as an official holiday. And this holiday is known as "Turkey Day" to many people just as Christmas is known as "Xmas" to many others. I know that whether we are talking about Thanksgiving, Christmas, Hannukah, Kwanzaa or any other holiday during this season, many may indeed see these times as seasons of celebration. These holidays also are full of expectation that they be somehow prefect or issue some sort of "miracle" in our relationships simply because it is "that time of year again." It is around this time of year that appeals from both churches and nonprofits for donations of money and time are highest because it is the "season of giving." People seem to be more in what is often called "the Christmas spirit" which is the same things as happiness, a positive spirit, a passion to give, and caring for others. Thanksgiving, which is coming up in only days in the USA, is the time when we are expected to focus on our blessings and thanking God for them.

I recall a time growing up when I was riding the bus to a special class and I was not happy with this arrangement of being sent to special classes, always feeling that I was blamed for my extensive bullying at middle school and sent to special classes as my "solution." One afternoon, at one point, I do not know if I was complaining or simply looked unhappy. Or perhaps she was directing this question to all the kids on the bus. But the bus driver, I recall, told us,, "Where is your Christmas spirit?" In other words, no matter how we feel at all other times of the year, we somehow are expected to set all that aside and adopt a spirit of enthusiasm, happiness, and positive thinking simply because 'tis the season to have a certain spirit.

Growing up, I have noticed that all the expectations surrounding the holidays seemed to so stress our mom and my stepdad so that they argued even more than they did during the rest of the year. I'm sure that, unless I'm missing something, that the expectations of the familiy on holidays drives many families to argue even more on holidays. You take into consideration the fact that families are hit hard by ads screaming for their business and so they feel that to "give their loved ones a holiday worth remembering," they have to spend, spend, spend and even if they must run up debt. Our materialistic culture gives us the notion that if we "really love" our loved ones, we will spend a large amount of money on them, even if we must run up extensive credit card debt to do this! These cultural pressures weigh most heavily on middle-class and low-income families, who are pressured to
"give their kids a memorable Christamas" with money they often do not have and to take on even major debt through charging up their credit cards.

It is not only the materialistic aspect that weights so heavily, and this one affects virtually everyone. I'm talking about relationships and how it seems that around this season, we are all expected, no matter what our issues the rest of the year, to set all these aside and somehow to "get along with everyone." Single people find this time of year especially lonely, as do those who have lost loved ones and especially in the first year of the loss. People who suffer from infertility also suffer especially around the holidays which is considered a "family time." There are many other people who do not find the holidays a time to exactly celebrate. People who are not on speaking terms with first-degree relatives like moms, dads, sisters, brothers, sons or daughters suffer during this time of the year. So the "holiday spirit" is very difficult for many people to comeby. Research tells us that the suicide rate goes up around the holidays, especially on Christmas Eve. I'm sure many of us are aware of and may have even viewed a Chrismas Eve movie called "Silent Night, Lonely Night." The title is self-explanatory. (A recent article refutes this, however, claiming the suicide rates do not spike at this time of the year but rather in the summer months; however, the article does not deny that many people have a hard time during the holidays. This article can be found at: http://www.usatoday.com/story/news/nation/2012/12/05/holiday-suicide-myth-persists-research-says

I have never been a friend of tradition. I know that many, maybe most, people are. Tradition tells us that, on Thanksgiving in the USA, we are to cook and eat turkey, gravy, dressing, and all the side dishes. Growing up, We as a family went to my maternal grandmother's to eat and  was stressful not only for her, but for the rest of us. We all had to be at her home on time and her home was filled with people from her extended family. We would hear Nana sigh to herself, "This is all very hard." Yes, there was the turkey, dressing and the other tradional food. I wondered then and I especially wonder now, why do we use one day, supposedly to focus on giving thanks for our blessings, to gorge on rich food while over half the world does not have enough to even live? How does "pigging out" on rich, calories-laden food do anything to show our gratitude to God for providing for our needs and many of our wants? Would it not be a superior show of giving thanks to share this abundance with those who do not have enough to eat?

And I know that I myself am not immune to the increased expectations of the holidays. For I have an active petition campaign call for funding to cover all people with autism, including those children of families with low incomes or minority families, and underserved adults. I am beginning to, guess what? I'm using the holidays as a platform to motivate people to not only sign the petition but also to join me in circulation it. When I post my petition, in my header text, I have been including this: "All I want for Christmas is to see new signatures on and shares of this petition." Like most others in my culture, I'm making the most of "the Christmas spirit" that I see in many people, to get support for my petition in the form of new signatures and increased "shares" of it. In my family, the deaths of many relatives and the estrangement of some, means that holidays are not an unmixed celebration. Holidays give me an awareness, not always pleasant, of the passage of time. When I was seeking to conceive a second child for many years, I especially did not enjoy seeing so many families with two or more children.

There is another thing about holidays, the pressure and the expectation to not only have but to enjoy social get-togethers and often with people we don't see the rest of the year. For those of us who are touched by autism or related conditions, holidays can be especially difficult. The tastes and textures of the kinds of food we eat on holidays differs from most of the food we eat during the reast of the year. The social or family get-togethers and often the preparations, involved lots of noise and confusion. And we are expected to participate in all this, to make eye contact, to converse, and to not only tolerate but to enjoy tastes and textures of food that we don't usually eat the rest of the year. All thse things pose a challenge for many people who have any form of autism or related differences. This affects many families who have children or loved ones with any of these challenges as well as many individuals themselves. At best, many may find this time of year plain confusing and overwhelming.

From the standpoint of all of those who struggle with weight and food, holidays are tough. Research tells us that the average weight gain around this time of year is from four to seven pounds. Too many of us have fallen for the notion that it is somehow rude or ungrateful to say "no" to food, even if we know that we do not need its calories or should not eat it. I have heard it said that the average amount of calories in a given holiday meal are more than we should consume in any given day. The fact that Thanksgiving is often called "Turkey Day" betrays that fact that many see these holidays as an excuse to stuff ourselves and forget the nutrition rules that we are expected to observe the rest of the year. And then, after the holidays, ads hit us with their call to purchase weight-loss products and to make weight loss our "New Year's Resolution."

Thanksgiving is coming up within hours and is purpose is obvious. But are we to give thanks only on this one day of the year? We know better, I think. I have been seeing numerous posts on this holiday about what people are thankful for, such as loved ones and treasured friends, and other valuables. I have seen many posts expressing gratitude to the military and to veterans. This holiday's purpose is praiseworthy. I'm not trying to bad-mouth food, fun, and togetherness, only all the expectations that they stress many people with that are unrealistic and the abuses of materialism, hedonism and gluttony that get worse around the holidays. The reason that holidays so often do not live up to our cultural expectations is that, the rest of the year, the things these holidays represent tend not to be a reality in our lives. It is, I think, understanding that so many people do not find the holidays "the most wonderful time of the year" and caring for them, that we are remembering the caring, love, sharing and giving that are meant to symbolize this time of the year.