Small Town Dilemma

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	I am struggling with a decision and would like your input. In my life B.K. (Before Kiddos )... I did a lot of public speaking and I really enjoyed it.   I now live in a small town with many neighbooring small towns.  I really feel that I should be out there educating people about autism.   I am no "autism expert", but I live it every day and the number one complaint I read about on these forums seems to be frustration over being misunderstood by an uninformed/unaware public.   I think I could really raise awareness about autism in my community. Here is my dilemma:   Because I live in a small community, I would be, in essence, announcing to everyone that my son has autism.   I am certainly not ashamed of that, but the fact of the matter is, now he is only 3 yrs old.   But eventually he has to grow up in this town, go to high school, make friends, find work.   Am I betraying his privacy by becoming a public advocate for autism.   I understand your dilemma, and it's one reason why I don't use our real names and photos on this forum.  It's okay for others to know he has autism, but I don't want him or anyone he knows to be able to google up personal and embarrassing things about him.  I also don't want his teacher or school to read anything negative I may write here about them. Now that he knows his own diagnosis, I plan to share it with his class, and when he grows up, I hope he'll be open about his autism and able to self-advocate.  If it subjects him to discrimination, I guess we'll have to take on that battle. I guess my point is, if you choose public speaking, continue to consider privacy issues -- evaluate carefully what personal details you're willing to share about your son, yourself, and others in your lives. Good luck with everything, whatever you decide. That's how I feel too - and also why I never use real names or post photos. I am a former social worker and am all about advocating. But in this area, I have chosen to be much more quiet than I normally am - because I am worried about ds' privacy. My ds can often "pass" for NT and so I go back and forth over what I should do. We JUST moved to a small town and so I am wrestling with this. I don't have a good sense as to how people feel about autism yet - and I don't want to set ds up to fail. He starts kindergarten in the fall - so I haven't told a soul except the school. And I have told them that I don't want the info shared with ANYONE and explained my reasoning. Especially after meeting him, I think they understood. He has quirks, but unless you're really looking for them and/or listening for them - you might just think he is a little different. Intelligent, but different. Most people would not think autism. I imagine I will eventually start telling people if it becomes obvious and he needs greater help than what he does now (has always been mainstreamed without a para for his private pre-schools - and attended ECSE 2 days a week, which had paras - but those were for everyone in the class). It's a tough decision - and even tougher when you are USED to public speaking and/or advocating for various issues. But I go back to what someone told me just before we got a diagnosis - "Think about what you say EVERY single time - because when your son reaches a certain age - everything will come back to haunt him. You have to think about his privacy years down the line and if you tell everyone everything now - he has no choice as to who he wants to tell and WHAT he wants to tell them in the future." So, I have safe-guarded his privacy as much as possible. He's only 6 - and I think it will be difficult to continue. I feel like a hypocrite to some extent - preaching advocacy and not always practicing it. Anyway, not much advice here - just empathy!  I have become a public speaker as I have started my own organization in my community.  I feel that by sharing my experience as a parent and a advocate of an autistic child will help others and I haven't worried about  what people thought. I only make sure that I don't say or do anything that would hinder my cause or cause judgement in a negative way.  As far as letting the cat out of bag about his diagnosis, I feel like people will have a better understanding on his behaviors and why he does the things he does.  My son wants people to understand him more. My son is who he is.  I post his first name and I suppose if someone REALLY wanted to find out who he was they could.  I am not concerned with people knowing who we are.  Keith is also able to pass most of the time.  I am not worried about people knowing he is on the spectrum.  I hope he shows the world that autism can be managable for some to be independant.  I would be more worried about abductions etc. I think it depends on your child's age, level of functioning, his/her attitude about it (if s/he knows about his/her autism yet), etc. We haven't told our son yet - plan on doing it when he is 8 or so - depending on when HE asks. And, mostly people don't really ask questions about him or his behaviors. He flies under the radar for the most part. I think it is AWESOME that some of you are speaking out. If my son has that same drive as joyful's does - to want people to understand him more - then I shall go out and speak as well. Until then, I'm trying to keep my mouth shut so that he eventually has the choice to make that decision when the time comes... I have to agree with Snoopywoman. I tell people on a need to know bases. I do not want anyone including the school district to have a preconceived notion about his behaviors or abilities. I watch my child diligently at every event I take him to. I do not want every other parent to be watching my child so closely. A friend of mine has a child who has graduated from most of his services. ( has a little speech) Her son last year had a another child who was asd in the classroom. None of the other Moms knew that my friends son was also asd so she was privvy to a lot of opinions. They basically bashed this other kid all year long. Nice understanding Moms right? After that do you think my girlfriend was going to tell the other Moms? We are about to start Kindergarten at the same school this fall. I also do not want to speak publically because I do not want to lose whatever funding that I am getting from SD or IE. I just wanted to add that I respect other people's decision to use names and photos.  We each have to find what feels right for us. KathyK,  About your friends story.  I would have been livid if I heard the other mothers talking like that.  I most certianly WOULD HAVE said  "I am sorry you feel that way because my son has autism too."  They should be ashamed. JanisA, My girlfriend did not speak up because she did not want her son to get extra attention. We live in a small community within a big city. These are my neighors and friends. We have a lot of competitive alpha Moms as well as a lot of sweet Moms. My friend and another Mom I know share as much information with me to help me make the right decisions for my ds. One thing that I have learned is that my SD's does not have very good BIP nor do they do FBA until it is too late. They are very re-active not pro- active. How do you tell another parent of an asd child that they are poorly served?   That their child was basically set up to fail?   By the time that a child had his 12th meldown in two weeks, that poor child pretty much alienated a lot of kids. For me the lesson is to see how our plan is working and what can iI be doing more proactively in terms of my sons behaviors? All of us keep quiet as we have an agency to guide us on these issues. If one wants continued funding for these things, it is best not to be political at all. KathyK To each thier own.  I wish you all the best. I think all of you are great examples of why the decision is a hard one - because you all make valid points.   I am going to think about it some more.   I think it is important to raise awareness, at the same time, I don't feel like I need to discuss some of my son's very private issues with the world.    I am totally on the other side.  I tell everyone about Adam's autism.  The beginiing of each school year, I have had the teacher explain to the class that Adam has autism.  What it means and what it doesn't mean.  I got some great resources from this board and also from an advocate.  We all wear autism t-shirts.  I have autism bumper stickers etc etc... Now that he is going into middle school, I don't feel the need to tell each of his classes.  But I have a packet all ready to send to each teacher.  Adam even tells people.  And sometimes his brothers will say something too.  I would like to add that I respect everyone's own decision on this.  I have several friends that have told me that they would not be like me and I totally understand.  In fact, my DH, doesn't really tell anyone he knows.          It's definitely a hard decision. Having just moved to a new town and not knowing what people's reactions will be, I am being VERY cautious. I've had some bad experiences in the past when I told people (a "friend" decided to keep her son away from mine for an entire year after I told her for instance). And we too, have had alpha moms in the past. I don't  know what it's like here - but I do know that most people are ignorant (meaning they just don't know much about autism) and sometimes they will then withdraw because they are scared of the unknown - regardless of what you try to tell them. My preference is to get to know people, see how they are, and then gently broach the subject. Like maybe telling them about a friend whose child has autism and see how they respond. Then, if they respond in a positive manner, I may eventually tell them about ds. I shall wait and see. I, too, respect everyone who uses names and post pictures - I really love seeing the pictures! But, with my career as a former social worker and my concern over ds' privacy (in addition to what some trolls did with pictures on this board over a year ago) - I just choose not to. Am I paranoid? Darn tootin'! I would love to be more pro-active and outspoken, because that is generally my personality. But this isn't just about me - it's about my ds. If he chooses to tell once we talk to him about his diagnosis - I have no problem with that. As long as it is truly HIS choice. In the meantime, I sit quietly (okay, not always so quietly!  ) and wait...
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