Monday, 11 January 2010
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How I Was Introduced to Xanga / Autisable
I've been going back and forth on yet another blog post on autisable in the comments section. It brought up again the whole issue of High Functioning Autism (HFA) vs Low Functioning Autism (LFA) which is a ridiculous concept however due to a few "extremists" for lack of a better term it has reared it's ugly head again. Well, this was my last reply to the post and will be the final time addressing this issue unless I am personally attacked yet again by what I believe to be quite the opposite of an accepting and diverse group of individuals.
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This was how I was introduced to the concept of "neurodiversity":
I merely "tweeted" I can not wait to see Daniel in his new and perfect body in the arms of Jesus. In my faith I believe that we are resurrected after Christ's second coming to be in heaven in perfect new bodies. Simply I will no longer have migraines or arthritis, my brother will no longer be diabetic and Danny will no longer have to struggle to communicate, suffer from anxiety, overstimulation, etc, etc. Next thing I know my statement is re-tweeted and condemned as hate speech. I am accused of hating my child and believing that God values autistic children less than others. It was the most hurtful and unbelievably disgusting thing I had ever experienced from within the autism community.
For the record my children are the loves of my life. I love Daniel no more or no less than my son Brian who by all accounts and evaluation is a typically developing individual. Do I wish Daniel was cured. Hell Yes!!! In my mind a cure does not change who he is as my son, it does not have to be the end of his talented self, his funny self, his lovely and beautiful self just as muscular dystrophy or cancer would not change who he is if God forbid in the future he was diagnosed with either of these illnesses.
I would never have heard of neurodiversity or HFA vs LFA as a debate had I not been personally attacked for a simple and what I believed to be an innocuous statement proclaimed on a social networking site. So who is picking on whom?
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Because the post from my accuser was re-tweeted by several autism sights as "@p1autismmom why do you think that God values autistic people less than typical ones?" which by the way was not what I said , I contacted the sites individually to ask them why they would re-tweet such wording with such a false inference without checking to see if such a statement was ever made. Every site replied that they were on an automated re-tweet system and that every time the word #autism was used the entry was re-tweeted. I was further told that there was no way they could go back and read through all of their re-tweets so they could not address this particular issue directly but would try to do better in the future. So the explanation of low staffing and automation was what I was provided with as an excuse for pure laziness and the position of no accountability.
Joel at autisable did make an effort to find the re-tweet but was unsuccessful. He told me that he had checked my web page and liked my blog and would like to know if he could use some of my posts for his page to which I obviously agreed.
So there is the story of how I ended up here posting on all of your comment sections.
P.S. I love the fact that when I spell checked this text I had the opportunity to hit the ignore key when the word neurodiversity came up. I am certain it was a divinely inspired directive
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Comments (17)
I realize this happened some time ago, but how ridculous that someone misconstrued your words. If someone came to be today and told me that Emily could be free of her Down syndrome, but would remain the same wonderful child that she is; I would be a fool to say no. Of course you long for the day that Daniel is free of the burdens of this world. I look forward to the day that we all are free from our burdens. No more depression for me, no more heart issues for Emily, who wouldn't want such a thing?
I am glad it brought you here, though.
@gwacemom@momaroo - ME TOO!!! I know that meeting people like yourself and your girls has enriched my life in such a way that it might not have been had I not been accosted. lOl I think it is such a blessing to have faith that we have a new home to hang out in and that this is not all there is because wouldn't that be the worst.
@P1AutismMom - My faith is the one thing that has helped me through all of this. Knowing that God felt we were special enough to be blessed with Emily makes all the difference in the world. I know the same holds true for you as well. If this were the end of the line I think I would just break down right now.
What total crap! But, like Ange, I am glad it landed you here!
I am a very healthy individual but still cant wait to be in a perfect body! So why would you not want that for someone whose body has a lot of issues?
@der_lila_Stern@xanga - Thank you!! I don't understand it either and the only reason other than that one incident that I get involved is that Dan is somewhere in the middle and I have no problem with people being perfectly happy with their high functioning children but to accuse parents of hate when all they want is relief for their kids it just boggles the mind.
@gwacemom@momaroo - @der_lila_Stern@xanga - The latest post actually equates autistic head banging with concert going head bangers and self injury with cutting. It is absurd and anyone who knows anything about neurological issues and self stimulatory behavior would call this person a moron.
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@P1AutismMom - I know nothing about either of those things, and I would call that person a moron!
@der_lila_Stern@xanga - LMAO I like you : ) You are smart.
On a side note I just received an e-mail from my friend Linda regarding her 11 year old son Luke who has just had his first seizure and is at Children's Hospital. I find it ironic that on this day I hear such news. I wish I could post her gut wrenching e-mail on my blog but I would not breach her conffidence. Let's just say their lives are currently being turned upside down and there is no sleep, no joy in this moment. Autism is not a beautiful thing for everyone.
@P1AutismMom - I like you a lot and am glad you landed here.
No, autism is not a beautiful thing for everyone. And I have always said that my right not to be cured should not supercede Dan (or anyone's) right to be cured. The option should be available for those that want it. I happen to be able to function in a manner that makes me happy with who I am, weirdness and all. I am not prone to seizures (thank you Lord), I no longer self injure (thank you Lord), I only hand flap as a stim when alone, in private, (thank you Lord) and I have come a long way from where I once was (again, thank you Lord).
I do NOT think that you love your son any less because of your faith or your desire for his healing. Not one whit. There are those of us out there that want neurodiversity w/accomodations but at the same time... think those w/autism should also work on improving.. it's like meeting in the middle. I don't see what's so wrong about that, either.
You can hate the thing without hating the child it holds hostage.
@heatherbabes - Thank You!!! This means a lot coming from you.
@P1AutismMom - Just didn't want to leave ya feeling like you were crazy or something :) heh...
I saw nothing wrong with the comment personally, and didn't even realize there was something "wrong" with the idea of the day when we all reach our heavenly rewards... including the bodies without burdens. While autism doesn't cage me (the way it might some others) i do have physical ailments that do. Oh, yea, Lord... deliver me from them!! LOL I am looking forward to that day with utter joy and didn't think it right that you were penalized for claiming that gift for your son and yourself. :)
@heatherbabes - I knew I really liked you : )
@P1AutismMom - It's really all very logical, if one just stops and thinks. The problem is a person reads a statement, one time through, and then allows an emotional thought to rule them and prod them into action. Unfortunately, this can lead to consequences such as those that you faced. Sad. More people should stop and wait until the emotional impact recedes enough to think clearly. Give it a reread.
*steps off soap box as I realize I am preaching to the choir, as some say*
@heatherbabes - I most likely overreacted to the original "tweet" but it was kind of like someone saying "hey _______(Insert your name)________, why do you hate old people and puppies?" Everyone assumes you said that because someone put it out there in the form of a question and all the automated sites start regurgitating that __________ is a person that hates old people and animals. Crazy and scarey how something could damage a person's reputation so easily. I almost stopped twitter and blogging altogether just because of that one incident.
@P1AutismMom - Well, darn it! I'm glad you didn't cause like... I"d miss out on all the great stuff you say! I don't always respond with a comment or nuthin' but I'm reading... and watching :) heh...
Yeah, I don't blame you either for reacting the way you did. It came across as a personal attack to me. I mean, really? I don't know how anyone could really misread your intent with the original tweet... but stranger things have happened and I"m glad you're hear and I'm glad you're not going anywhere since I"ve just relatively speaking found you and and and it's all about meeeeeeeeeeeeeeeeeeeeeee!! heh
@heatherbabes - LOL, Well now I don't just like you, I Adore You!!!
That's funny because I though it was all about meeeeeeeeeeeeeee!! LOL I'm glad I stuck around too and that you picked me up as a twitter friend. The twitter thing is funny because I have 3 groups of followers and sometimes when I tweet something it gets read 3 different ways depending on the perspective. Very interesting study to be had there. : )
@P1AutismMom - and i forget your twitter name LOL Asperger's strikes again....
But I have different people who follow me and such but the ones I interact with the most have some connection to autism or special needs kids. I guess it's cause they can understand me better than anyone else :) lol
It is interesting to discover how one comes across to others. Thankfully, my family have always been straightforward with me about that!! No shock or surprise to find out other people outside of them thought I was weird or a hoot... depending on their experiences :)