Autism Twitter Day Today!
December 16, 2008 by Kristina Chew, PhD
Filed under Health
Yes, it’s today, Tuesday, Dec 16th – 9AM, 12:30 PM and 8 PM (Pacific Standard Time). Autism Twitter Day is open to Twitter members, specifically those who are members of the autism community, whether you’re a parent, sibling or relative, and too those on the spectrum. Prizes will be given out, most geared to children and young adults with autism or Asperger syndrome; lots more information about the day is here.
The hashtag to be used for autism twitter day is #ASD. So, if you post a tweet today on the topic of autism / positive autism awareness, please use the hashtag, either in front or at end of the tweet. You can open up a window at www.summize.com and input #ASD to follow along with the conversation at the specified times; conversations may well run longer than one hour. And, stay tuned at Autism Family Adventures for prize and panel information.
Huge kudos in advance to Bonnie Sayers, who organized this event and who’s put together an ever-growing list of prizes (which will be awarded based on people’s knowledge of autism spectrum disorders). Due to the time differences (I’m on the East Coast), I won’t be able to follow all of the conversations, but I will be as much as I can.
Get your tweeting fingers on………
Wish I had known earlier but I’ve been preoccupied. I’m coming back online though, if not on Twitter today…maybe next time.
See the new Joy of Autism website at http://www.esteeklar.com.
Huge, huge kudos to Bonnie for organizing it. I made a lot of contacts today that I hadn’t yet met online.
But I’m hoping that next time we do this maybe we can have different hashes for different discussions…from what I could see of the different “hosts” they were fantastic, but it was difficult to wade through all of the tweets to see what everyone was talking about. I don’t usually have sensory issues, but I was sure overloaded trying to keep up with everything.
I think that this was an awesome idea, and I can’t say enough in praise of Bonnie for organizing it, and for getting so many great people to take part in it. Maybe I just wasn’t familiar enough with twitter to organize something properly, or something else?
Darnit. I forgot.
I hope to participate next time.
I had to run around all day to gather the medical information from his physicians to prove my son is still autistic and take it to DHHS. It took hours.
It looks like it was a fun party! Kudos to Bonnie for arranging it! It takes a special talent to put that together!
Keep the conversation going…
Autism and Healthcare twitter day December 23rd all day #HHSTom Daschele invited Tanners Dad / Tim Welsh will be the Autism / Healthcare Community Discussion Host and Moderator. Sign onto twitter. Search for #HHS and post your commentsand answers to questions.
No prizes no games no tinsel Just a conversation for families fighting for children with Autism. Be There Tues Dec 23 ALL DAY Obama wants to know.
http://www.causecast.org/member/tanners-dad
http://www.childdevelopmentpartners.com/blog
From TannersDad’s website
“We delayed his Kindergarten vaccines because we thought their might be issues but did so on solid medical advice that he would be fine. This sentence was the last after his shots. Move ahead six years to June 2008. His doctor had committed suicide.”
You have got to be kidding me (totally aside from the fact that in this context “their” should be spelled “there”. While my sympathy goes out to that doctor’s family, I’m not quite sure why this would EVER be included in a “bio” on a website. Is there a note or something that would indicate that the doctor’s suicide was related to Tanner’s autism?
“A Defeat Autism Now Doctor looked us in the eyes and said in the exam room that he believed that vaccinations and environmental factors played a role in Tanners Autistic condition”
That’s hard to believe…oh, wait…how much did you end up paying that particular doctor, not only for examinations and tests, but for supplements and treatments afterwards? I find it difficult to believe that a DAN doctor could look you straight in the eyes and not be telling you the truth.
“Nobody listens to the parents. We are not hysterical radicals.”
Well, some of us aren’t.
“The establishment refuses to do the research we request. Has secret meetings. Rewrites their own studies.”
Actually, there’s a lot of great research going on right now, that is showing a lot of promising information. Actual research- physical studies, double-blind control groups, verified sources. You might want to look into it at some point. I’m curious as to who (in your mind), the ‘establishment’ that is suppressing information consists of? Big pharma, big oil, Jews, the American govt (autism is actually world-wide, you know), scientists, doctors who make money off of desperate parents? Please expand on that, as I’d love to hear it.
With the amount of time that I’ve spent studying history, one of the few conclusions that I’ve been able to reach (through actual research with verified sources), is that conspiracy theories tend to implode pretty quickly. When did the “autism” conspiracy start? With Kanner? ABA? Polio Vaccines? Catherine Maurice’s book? “Suppression and denigration” of Wakefield’s study? The MMR?
“Gets stars to call us parasites.”
Which stars would those be? And I’m curious, as a parent who is also interested in scientific research, how the opinion of “stars” might matter at all? I’ve heard and met of very few “stars” that have any scientific knowledge at all, or are qualified to speak on any medical knowledge. Is there a secret cabal of scientific “stars” that the rest of the world isn’t privy to, or “stars” in Hollywood that exert mind control over the rest of the world?
“Come live at my house for a week, then give us your opinion.”.
No problem. I have 13 year old autistic triplets all over the spectrum, and since your son is verbal now (”Hi Daddy”…from the citation on your webpage), I think that it would probably be a nice break for me. Tanner looks like a lovely child. My kids are all awesome, but there are challenges involved in living with them, so please, be prepared. They are triplets, but there are some differences between them. R is going through puberty, and although she is extremely expressive in her writing, sometimes you need to read between the lines to tell what she’s feeling. This week her friends in her self-contained class are obsessed with hairbands, so budget about an hour a day for to go and buy hairbands at the local store. K is doing awesomely well- she’s been fully integrated for 5 years now, but because of her cancer 4 years ago she’s lagging behind her class to a big degree in history, English, and French- I have an appt. scheduled soon to figure out whether she’s got a learning disability, processing problem, or whether her academic problem are caused by her missing an entire year of school because of her cancer. She’s also being bullied again this year, so we do counseling sessions 3 times a week after school with some of her peers to try to work that out. Because of the bullying you also need to check the computers every 20 minutes or so while you’re doing everything else, because the girls are doing awesome social things with networking, but they still need supervision. D is still living in his group home because he not only tries to kill his sisters, but eats himself…if you can please find a way to stop him from eating the skin off of his hands and creating large haematomas on his thighs from punching himself, I’d appreciate it. Duct tape works, but it’s not really that great to ingest in the long run. He’s also lately entered a wonderful new phase where he’s doing the best to rip the foreskin off of his penis, and since he’s in a group home and the workers have to be careful of how they touch him, that’s a bit concerning. Since (for very good reason) workers at his home are only allowed a certain amount of contact with him, he’s desperate for deep pressure, so we usually try and do that on Thursday nights when we get him together with the family at an awesome centre built for autistic children. But because we’ve recently moved to a new city we have no workers for the girls (but please do feel free to catch up on the paperwork while you’re here- and also don’t forget to call the govt. about the back child support). I would be thrilled to trade places with you for one week.
I’d like to see the original “invitation” that you got from Tom Daschle please… I have emails at jen@blei.org as well as aenea64@gmail.com, or you can feel free to post it on a comment on my blog at http://chaosandjoy.blogspot.com. Actually, don’t even bother with the comment section- just email me the invitation with all of the headers from an email from Tom Daschle included, and I’ll gladly make a new post on my blog for you and publicize it on facebook, digg, slashdot, reddit, and fark so that everyone will know that Daschle has invited YOU to participate in this discussion. There are a lot of people on all of those communities with autistic children or relatives (or who are autistic themselves), so I’m sure that they will be all ears.
I fight FOR, but mostly WITH, my autistic children. All 3 of them are the most amazing people that I know. Our household ranges between children who are verbal and have had horrendous bouts with cancer to children who are non-verbal and STILL manage to communicate. I fight at the side of the autistic people I know who have struggled and fought to make a place for themselves in the world. I fight for and with my children, who deserve to be accepted for the wonderful people that they are. I can read and write and do math and have actually made it past high school, so I scrutinize very closely every scientific study that I find, and don’t put my faith in snake oil salespeople. I am also a historian, so I fully realize that very few conspiracy theories hold up over time.
I’m glad that there won’t be prizes or games or tinsel during your conversation. Even though I recognize the awesome things that my kids have to offer, I don’t think that I’ll be throwing tinsel about it any time soon. When it comes right down to it, there are very few lives that people throw tinsel for. I’ll settle for my kids being the awesome, loving children that they are, who have to work harder than I do every single day and are STILL wonderful people.
I’m sorry that Tanner most likely won’t say the same thing about himself, from the tone of all of your posts.
To reiterate- I would love to know exactly “who” the conspirators are. I would like to know why you included Tanner’s doctor’s suicide in your blog. I would love to know which “stars” are involved in a conspiracy against autistic children.
Again, please do send me the actual invitation to you (specifically), from Tom Daschle, and I will post it and publicize it everywhere that I possibly can. And I will gladly trade places with you any week that you want (with appropriate safeguards in place).
Perhaps it’s time that we focus our energies on
our actual children. I happen to like my kids quite a lot as human beings, completely aside from the limitations that some parents seem to put on them for being “different”.
Tinsel, and prizes, and awards mean nothing at all. What matters is that we do the best thing for our children or ourselves, and at the moment, we’re lucky not only to have science on our side, but awesome people with autism who have gone before us.
I would suggest that perhaps, if you take a good look at Tanner, that you won’t only find someone that you love (which I don’t doubt at all), but even possibly someone to admire. No matter how bad I might think autism is on my bad days, my challenge is to find ways to help my children communicate with me and the world. Dan doctors and quack cures have proved over and over again to be ineffective, so I’m going to stick with the scientific method for a while. But my offer still stands to switch places for a week, since you so generously offered that in your blog post.