autism twitter day, a digital scrapbook

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Autism Twitter Day, A Digital Scrapbook By PF Anderson, Emerging Technologies Librarian, UM Health Sciences Libraries, [email protected]

Post on 21-Sep-2014

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A selective overview of highlights from the amazing people who highjacked Twitter for a day to function as an autism awareness and advocacy tool, and the amazing experience that was Autism Twitter Day.

TRANSCRIPT

Page 1: Autism Twitter Day, A Digital Scrapbook

Autism Twitter Day, A Digital Scrapbook

By PF Anderson, Emerging Technologies Librarian,

UM Health Sciences Libraries, [email protected]

Page 2: Autism Twitter Day, A Digital Scrapbook

Disclaimer

• Autism Twitter Day was an amazing experience, but was almost too much to absorb. I suspect that each person to participate experienced the event quite differently. This collection represents only my personal experience and highlights from the event.

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Who Made Autism Twitter Day?

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Bonnie Sayers

• BellaOnline: Autism Spectrum Disorders Site– Bonnie Sayers– @autismfamily– http://twitter.com/autismfamily/

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What is Twitter?

Many people, overlapping communities, communicating in

140 characters or less

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How Did Autism Twitter Day

Happen?

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Lots and Lots of Social Media Beforehand

• Event Blogs – For marketing and

promotions• Buttons

– For branding & promotion

• Twitter Groups– To gather the

community

• Friend’s Blogs– To “retweet” or

distribute the message• Ning Network

– To plan and organize• Prizes & Speaker

Panels– To draw a crowd

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Lots of Twittering & Twitter Tools

• Hashtags (#ASD)– A hashtag is word marked before with the hash

mark or number sign to facilitate automatic tracking • Search tools to track the stream

– Summize, a.k.a. http://search.twitter.com/• Friends to capture the stream• Around 5,000 tweets in 24 hours• We even made the top “trending topic” on

Twitter! Twice!!

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Blogpost #1• December 1:

http://autismfamily.tumblr.com

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Blogpost #2

• Autism Family Adventures: http://autismfamily.blogspot.com/

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Twitter Group Tweet

• Tweet @pfanderson– I just joined the autism Twitter Group

http://tgr.me/g/autism and you can too.

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Twitter Groups

• Twitter Group: Autism - Parents of Autistic Children

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List of People to Follow

• Autism and Aspergers Twitter Connections

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Causecast

• Tweet: – www.causecast.org does nice article about

Autism Twitter Day #ASD http://tinyurl.com/6cncdt

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Causecast

• Causecast: RSVP For Autism Twitter Day: http://www.causecast.org/news_items/7665-rsvp-for-autism-twitter-day

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Ning: Pecs Club: Group

• Twitter Autism Day

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Prizes

• Tweet @autismfamily– For the gluten free chips please name what

therapy tool Temple Grandin created #ASD first tweet wins food should tast good good gift box USA

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Twitter Search #1• 26 more results since you started searching (10

minutes)• Tweets:

– Follow #ASD to find out about Twiter Autism Day - Do you know the trusths about Autistic spectrum issues?

– My wife was not surprised by the diagnosis. I was.– I find kids with sensory issues do better with my dog tags

clicked to belt loop behind them– @codeman38 what are you in graduate school for? How is

it going, any links to a website or blog to share for others?– And more …

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Twitter Search #2

• 10 minutes after previous screenshot• Tweets:

– In my work with kids on the autism spectrum I have met great kids: honest, hardworking, responsible, caring loving kids

– I’m studying computer science, particularly with a focus on natural language processing

– And more …

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Twitter Search Trending Topics

• Trending topics:– #ASD, Adam Walksh, Xmas, Shorty

Award, Santa, #tcot, AT&T, #SanFrancisco, iPhone, Bush

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Twitter: Trending Topics

• Tweet @trendingtopics– New Topic: #ASD http://tinyurl.com/5gjwe9– 22 hours ago from twitterfeed

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Why

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Isolation vs. Community

• Tweet @RainbowMum– Can you imagine how isolated parents of

kids on spectrum felt prior to internet! Now we can celebrate/share eachs wisdom/support! #asd

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Traits

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Therapist’s Point of View

• Tweet @susangiurleo– Kids with AS are creative, free spirits,

funny, silly, artistic, and really just a joy to be with.

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Tweet: TannersDad

• @pfanderson Tanner does not “Melt Down” He is the calmest happiest person on the face of the earth, no transition issues. Just wants another book.

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Tweet @johnnyA

• Got here late & realize only an Aspie/ADHD could go back and read all the #ASD tweets in one sitting

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Shared Article

• Tweet @lonestar818– Top 10 terrific traits of people with autism

http://autism.about.com/od/inspirationideas/tp/besttraits.htm

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• 1. Rarely Lie• 2. Live in the Moment• 3. Rarely Judge• 4. Passionate• 5. Not Tied to Social Expectations• 6. Terrific Memories• 7. Less Materialistic• 8. Play Fewer Head Games• 9. Have Fewer Hidden Agendas• 10. Open New Doors for Neurotypicals

Shared Article ScreenshotAbout.com: Autism: Top 10 Terrific Traits

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Life With ASD

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Tweet @pfanderson

• My son’s favorite video of what life is like for him is this one:: http://tinyurl.com/2fp9ho

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Retweeted by @sharon370

• Retweets are when someone really liked what someone else said, and so they are sharing it with their friends and community

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YouTube: In My Mind

• Video about life with Aspergers as a teen who likes himself pretty well.

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Tweet @rainbow_goddess

• Classmates said it was because you can read facial expressions and mood when you make eye contact w/a person. I said “But I can’t!”

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Tweet @datafaucet

• @gitchel My difficulty assimilating it is probably due to poor working memory huh?

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Tweet @gitchel

• @TannersDad Just saw your msg. I was dx about 2 yrs ago. But I suspected for years because of my son. My dx was just to make it official.

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Tweet @petsaretalking

• Any advice about helping an AS kid deal with bullies?

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Tweet @teenautism

• For #ASD experiences with bullying: http://teenautism.com/category/bullying/

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Teen Autism: Bullying

• http://teenautism.com/category/bullying/

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Tweet @KimDeanArt

• @justthatgirl101 My Aspie used to get very emotional watching the Simpsons, he didn’t like the cruelty in the show, it disturbed him

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Tweet @rainbowmum

• @MelinaTomson Day 2 after change of aide my son had a massive meltfown in lunchroom. All the convincing needed. HANG IN THERE!!

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Tweet @gitchel• NOT going into perfume store. My head

would explode. Wife can go alone.

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Tweet @gitchel

• @codeman38 I also stay out of the laundry soap section of the supermarket and Burlington Coat Factory

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Tweet @asdquefty

• Why do OSes insist on defaulting to maximum brightness? It’s a computer, not a flashlight, and it hurts my eyes.

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Tweet @coop179

• @jenrik06 be careful of the video games … learn from my mistake, that’s all my son does and talks about now

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Tweet @jenrik06

• @coop179 I try to llimit his TV & game time - amazes me how he remembers all the gaming stuff but can’t put letters 2geter to read

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Tweet @gitchel

• @datafaucet I’m trying to read - and THINK about - every tweet. It’s kind interesting how my brain just gets mushy and I fall asleep #ASD

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Tweet @TannersDad

• What does everyone feel about restraints? I have gone to school a couple of times & Tanner has been tied to a chair?

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Tweet @autismfamily

• Other topics for autism twitter day is bullying, rage issues, locker room problems, lunch at school, depression, sensory diet and fidgets #ASD

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Tweet @taless

• The hardest question I have had to answer since my son started “talking” was “What did I do wrong that God made me Autistic?

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Divorce

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Tweet @diy_pam

• Concepts of custody, timeshare, support don’t fit special needs of divorcing autism families http://is.gd/bWvX

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DIY Divorce

• December 16, 2008; Florida Divorce & Special Needs Children - It’s Autism Month

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Tweet @autismfamily

• @diy_pam we went with custody evaluation since I wanted supervised visits, long process but got it, court told Dad to shave beard

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Education

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Tweet @autismvox

• My son likes the routine of going somewhere else to school and being with other kids -- homeschooling is not for him.

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Tweet @susangiurleo

• Make a list of all the things that are right with your child. Put it into the folder along with all of his evaluations, report cards …

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Tweet @rainbowmum

• It absolutely amazes me when my son’s school thanks for staying in close contact. They say that’s not the norm. UNREAL. Can’t imagine.

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Tweet @specialedsolved

• @taless Don’t forget to tell the school, not only for cheeres, but to assure goals are moving forward too!

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Tweet @albruns

• @MelinaTomson I think there is a fine line between consistent staff and dependency. It depends upon how teaching is delivered

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Tweet @pfanderson

• @emptyenvelope What finally worked was getting him a Macintosh and letting him get involved w/ online social nets 2 practice engagement #ASD

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Tweet @specialedsolved

• @pfanderson Aaahhh, learning with a purpose, just what I was working towards at a parent/client’s IEP meeting today!

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Tweet @pfanderson

• @specialedsolved I’ve been saying this 4 decades. Used to teach women keyboarding by having them type fave recipes. Lrng w/ purpose=WIN

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Tweet @specialedsolved

• @albruns teachers need more resources to collect data. It’s where the parent comes. Parents can ask for more than the teachers can.

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Tweet @bwwojci

• Excel tool for teachers to chart and analyze data http://www.seat.ilstu.org/excel/

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Special Education Assistive Technology • http://www.seat.ilstu.org/excel/

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Tweet @autismfamily

• ABCs = antecedent, behavior and consequences, telling parent kid had behavior issues is not enough, what transpired beforehand - need data

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Individualized Education Plans (IEPs)

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Tweet @specialedsolved

• Did you know that data is the key to your IEP?Want changes in your child’s program? Ask (in writing) for the data.

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Tweet @JillShaw

• @MelinaTomson Have you asked for a parent advocat to be present at the IEP with you? They can be a great resource.

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Tweet @specialedsolved

• Did you know that spending 5 minutes per week asking staff in writing about IEP progress gets amazing results? Rotate the staff

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Tweet @specialedsolved

• @sensorynanny Many concepts are difficult to sell at the IEP. I definitely prefer selling concepts to staff 1:1 before meeting

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Other Tips

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Tweet @modelmekids

• @susangiurleo What do you recommend for child who is tired at end of day and refuses to do homework?

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Tweet @ susangiurleo

• @modelmekids truthfully, HW may need to be modified, or none at all. When the brain is tired it is tired. We can chat more if you want.

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Tweet @pfanderson

• @TannersDad I like to tell them 1-How 2 spot meltdown coming, 2-what are the phases of meltdown, 3-what works at each stage

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Tweet @liz4cps

• We love dogs; have a border collie, but son likes the cats better - almost ignores the dog! curious about dog therapy

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Tweet @mmiller20910

• @liz4cps There are therapy dogs, guide dogs, and assistance dogs. Some simple definitions: http://www.canismajor.com/dog/helping.html

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Tweet @MyPreciousKid

• @sensorynanny mine is a sensory seeker too - trampoline helps a lot

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Tweet @behaviorcounts

• To all parents out there - be very aware of treatments that are not evidence-based. Do not be pulled in by a snake oil salesman

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Tweet @emptyenvelope

• I would love to try a squeeze machine. I like to wrap up in heavy blankets, have the kids lay on my back, dog on my legs

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Tweet @tendrel

• Squeeze machine directions - http://www.grandin.com/inc/intro-squeeze.html woot!

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Diet

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Tweet @autismfamily

• @jennyhopkins have you searched twitter through www.summize.com and input gluten free, dairy free, many on twitter follow same diets

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Tweet @hellokittiemama

• @ericasteller GFCF diet a HUGE hit in my house. Takes work but worth it. Its lunchtime someplace so I’ll space the vivid details!

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Tweet @ericasteller

• @hellokittiemama Just now noticed your reply to my GFCF #ASD diet question. THANKS! Visiting www.bonbongazette.com now!

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The Bon Bon Gazette

• Welcome to the Bon Bon Gazette - here I’ll share my thoughts, photos, vents and triumphs - of daily life adventures in autism, gfcf diet reviews, one gluten casein free autistic wonderkid and his neurotypical “going dairy-free” sibling.

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Tweet @pfanderson

• @denipath4change My son, too. Cut food additives, esp dyes, and suddenly he came ALIVE mentally!

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Tweet @denipath4change

• @navi I have to do high protein, low carb - no potatoes, rice, corn … not grains … and I do better. Carbs give me brain fog

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Success

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Tweet @KimDeanArt

• “For success in science and art, a dash of autism is essential” -- Hans Asperger

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Tweet @castewar• It’s been argued that Glenn Gould

has/had Aspergers - if you’ve read about him, you’re probably inclined to agree.

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Tweet @denipath4change

• Trying to make the point that asd in adults is not a new thing and didn’t stop many folks from being successful

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Tweet @castewar

• Gary Neuman has Aspergers - think about that when listening to his lyrics.

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Tweet @casteware• Peter Tork of the Monkees has Asperger’s - not as overt in his music as Gary Numan.

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Tweet @TammiR• Well known person w/ autism: Temple

Grandin, Darryl Hannah, Stephen Shore

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Tweet @dbrodbeck

• @autismfamily Temple Grandin studies animal behaviour, and I study animal cognition, coincidence? Well, yeah, I guess so …

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Tweet @denipath4change

• @castewar lots of famous folks, einstein, edison, gates, man silicon valley types, lots of those in academia

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Tweet @casteware• Dan Akroyd has made mention that he

has Asperger’s, but it’s never been formally confirmed.

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Tweet @twitterbo• Famous People with Autism … http://twurl.nl/fvb6om

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List of Famous People with Autism• Love to Know: Autism: Famous People

With Autism: http://autism.lovetoknow.com/Famous_People_with_Autism

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Books & Reading

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Tweet @mommysescape

• @autismfamily the curious incident of the dog in the night time

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Tweet @mamacate

• @TannersDad I’m reading Married With Special Needs Children -- worthwhile IMO http://tinyurl.com/61sfxp

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Tweet @shakingsystem

• @navi Try reading Bock’s book. The connection between the A’s (autism, adhd, allergies, and asthma). http://shakingthesystem.blogspot.com/

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Tweet @albruns• Anyone read Autism’s False Prophets

by Paul Offit?

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Tweet @hellokittiemama• @TammiR Have you read Born on a

Blue day - author is AS and has kinesthesia. Excellent book.

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Tweet @queenuniquemvp• Read! “Autism and Race parents,

Advocates Seek More Prompt Diagnoses of Minority Children“ http://tinyurl.com/57a9ck

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Resources

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Tweet @Dianne_

• @MyPreciousKid #ASD diagn tool. http://tinyurl.com/6cb8ag http://www.facs.gov.au/internet/facsinternet.nsf/disabilities/services-help_child_autism.htm

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Australian Government

• Helping Children with Autism: http://www.facs.gov.au/internet/facsinternet.nsf/disabilities/services-help_child_autism.htm

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Tweet @TannersDad

• Autismbites.com

Page 113: Autism Twitter Day, A Digital Scrapbook

Autism Bites

• & Rocks & Bounces & Yells• http://www.autismbites.com

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Tweet @AdonyaWong

• “Temple Grandin on Encouraging Kids With Autism” http://bit.ly/175jt

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Temple Grandin from Education Week

• EdWeek: Temple Grandin on Encouraging Kids with Autism: http://blogs.edweek.org/edweek/speced/2008/12/temple_grandin_on_encouraging_1.html

• “Teachers tend to focus on the disability,” Grandin said.

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Tweet @mmiller20910

• Insurance coverage for autism -- state by state http://tinyurl.com/6638qe

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Tweet @lizditz

• @TannersDad educate your local police/fire about your child -- most FD PD very receptive to education re special populations

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PA Premise Alert

• Autism 101 for Police Officers: http://www.papremisealert.com/id70.html

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Tweet @autismfamily

• @denipath4change http://aq.server8.org/ measure autistic traits in adults #ASD fun online test

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Newsweek - The Autism Spectrum Quotient

• http://aq.server8.org/

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Tweet @twitterbo

• Autism and Schizophrenia share common origin, review suggests … http://is.gd/bZJr

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ScienceDaily

• Autism and Scizophrenia share common origin, Review suggests: http://www.sciencedaily.com/releases/2008/12/081216114746.htm

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Winding Down

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Tweet @doctorious

• @autismfamily Just checking in on #ASD status -- looks liike it is still in full force? Any way to get traffic numbers from Twitter?

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Tweet @navi

• Where are w coast @asd tweeters? Bed earlier than me, 2am in MI? Lol

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Tweet @TannersDad

• Just finished a 45 minute interview. I told the world about how great it was to come together in a positive environment. I am tired.

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Links Mentioned

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Background Information

• Autism Family: http://autismfamiily.blogspot.com/

• Autism Family: http://autismfamily.tumblr.com/ • BellaOnline: Autism Spectrum Disorders:

http://autismspectrumdisorders.bellaonline.com /

• Causecast: RSVP For Autism Twitter Day: http://www.causecast.org/news_items/7665-rsvp-for-autism-twitter-day

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Sources Mentioned• Australia: Services for Children with Autism:

http://www.facs.gov.au/internet/facsinternet.nsf/disabilities/services-help_child_autism.htm

• Autism Bites: http://autismbites.com/ • Autism Quiz: http://aq.server8.org/ • Autism Safety Products http://tinyurl.com/64l75f • Autism Votes:

http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm

• Behavioral Analyst Certification Board: http://www.bacb.com

• Bonbon Gazette: www.bonbongazette.com

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Sources Mentioned• Child Development Partners:

http://www.childdevelopmentpartners.com/ • Crisis Prevention:

http://www.crisisprevention.com/index.html • DIY Divorce: Autism:

http://diydivorce.typepad.com/diy_divorce_in_florida/2008/12/divorce-takes-on-a-different-perspective-when-dealing-with-a-special-needs-child-as-josh-greenfeld-----wrote-about-his-chidl.html

• EdWeek: Temple Grandin on Encouraging Kids with Autism: http://blogs.edweek.org/edweek/speced/2008/12/temple_grandin_on_encouraging_1.html

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Sources Mentioned• Future of Homeschooling:

http://futureofhomeschooling.ning.com/ • Grandin: Squeeze machine directions:

http://www.grandin.com/inc/intro-squeeze.html • http://www.seat.ilstu.org/excel/ • Mary's Gone Crackers:

http://www.marysgonecrackers.com/ns/intro.php • Pennsylvania Premise Alert: Autism:

http://www.papremisealert.com/id70.html • Science Daily: Autism and Schizophrenia:

http://www.sciencedaily.com/releases/2008/12/081216114746.htm

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Sources Mentioned• Teen Autism: Puberty:

http://teenautism.com/category/puberty/ • Wired: Autism Test:

http://www.wired.com/wired/archive/9.12/aqtest.html • Youtube as a Repository for Autism and Asperger

Videos: http://welkowitz.typepad.com/aspergers_conversations/2006/10/youtube_as_repo.html

• Youtube: In My Mind: http://www.youtube.com/watch?v=rbgUjmeC-4o