Autism Twitter Day, A Digital Scrapbook


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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.

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Autism Twitter Day, A Digital Scrapbook

  1. 1. Autism Twitter Day, A Digital Scrapbook By PF Anderson, Emerging Technologies Librarian, UM Health Sciences Libraries,
  2. 2. Disclaimer <ul><li>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. </li></ul>
  3. 3. Who Made Autism Twitter Day?
  4. 4. Bonnie Sayers <ul><li>BellaOnline: Autism Spectrum Disorders Site </li></ul><ul><ul><li>Bonnie Sayers </li></ul></ul><ul><ul><li>@autismfamily </li></ul></ul><ul><ul><li> </li></ul></ul>
  5. 5. What is Twitter? Many people, overlapping communities, communicating in 140 characters or less
  6. 6. How Did Autism Twitter Day Happen?
  7. 7. Lots and Lots of Social Media Beforehand <ul><li>Event Blogs </li></ul><ul><ul><li>For marketing and promotions </li></ul></ul><ul><li>Buttons </li></ul><ul><ul><li>For branding & promotion </li></ul></ul><ul><li>Twitter Groups </li></ul><ul><ul><li>To gather the community </li></ul></ul><ul><li>Friend’s Blogs </li></ul><ul><ul><li>To “retweet” or distribute the message </li></ul></ul><ul><li>Ning Network </li></ul><ul><ul><li>To plan and organize </li></ul></ul><ul><li>Prizes & Speaker Panels </li></ul><ul><ul><li>To draw a crowd </li></ul></ul>
  8. 8. Lots of Twittering & Twitter Tools <ul><li>Hashtags (#ASD) </li></ul><ul><ul><li>A hashtag is word marked before with the hash mark or number sign to facilitate automatic tracking </li></ul></ul><ul><li>Search tools to track the stream </li></ul><ul><ul><li>Summize, a.k.a. </li></ul></ul><ul><li>Friends to capture the stream </li></ul><ul><li>Around 5,000 tweets in 24 hours </li></ul><ul><li>We even made the top “trending topic” on Twitter! Twice!! </li></ul>
  9. 9. Blogpost #1 <ul><li>December 1: </li></ul>
  10. 10. Blogpost #2 <ul><li>Autism Family Adventures: </li></ul>
  11. 11. Twitter Group Tweet <ul><li>Tweet @pfanderson </li></ul><ul><ul><li>I just joined the autism Twitter Group and you can too. </li></ul></ul>
  12. 12. Twitter Groups <ul><li>Twitter Group: Autism - Parents of Autistic Children </li></ul>
  13. 13. List of People to Follow <ul><li>Autism and Aspergers Twitter Connections </li></ul>
  14. 14. Causecast <ul><li>Tweet: </li></ul><ul><ul><li> does nice article about Autism Twitter Day #ASD </li></ul></ul>
  15. 15. Causecast <ul><li>Causecast: RSVP For Autism Twitter Day: </li></ul>
  16. 16. Ning: Pecs Club: Group <ul><li>Twitter Autism Day </li></ul>
  17. 17. Prizes <ul><li>Tweet @autismfamily </li></ul><ul><ul><li>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 </li></ul></ul>
  18. 18. Twitter Search #1 <ul><li>26 more results since you started searching (10 minutes) </li></ul><ul><li>Tweets: </li></ul><ul><ul><li>Follow #ASD to find out about Twiter Autism Day - Do you know the trusths about Autistic spectrum issues? </li></ul></ul><ul><ul><li>My wife was not surprised by the diagnosis. I was. </li></ul></ul><ul><ul><li>I find kids with sensory issues do better with my dog tags clicked to belt loop behind them </li></ul></ul><ul><ul><li>@codeman38 what are you in graduate school for? How is it going, any links to a website or blog to share for others? </li></ul></ul><ul><ul><li>And more … </li></ul></ul>
  19. 19. Twitter Search #2 <ul><li>10 minutes after previous screenshot </li></ul><ul><li>Tweets: </li></ul><ul><ul><li>In my work with kids on the autism spectrum I have met great kids: honest, hardworking, responsible, caring loving kids </li></ul></ul><ul><ul><li>I’m studying computer science, particularly with a focus on natural language processing </li></ul></ul><ul><ul><li>And more … </li></ul></ul>
  20. 20. Twitter Search Trending Topics <ul><li>Trending topics: </li></ul><ul><ul><li>#ASD, Adam Walksh, Xmas, Shorty Award, Santa, #tcot, AT&T, #SanFrancisco, iPhone, Bush </li></ul></ul>
  21. 21. Twitter: Trending Topics <ul><li>Tweet @trendingtopics </li></ul><ul><ul><li>New Topic: #ASD </li></ul></ul><ul><ul><li>22 hours ago from twitterfeed </li></ul></ul>
  22. 22. Why
  23. 23. Isolation vs. Community <ul><li>Tweet @RainbowMum </li></ul><ul><ul><li>Can you imagine how isolated parents of kids on spectrum felt prior to internet! Now we can celebrate/share eachs wisdom/support! #asd </li></ul></ul>
  24. 24. Traits
  25. 25. Therapist’s Point of View <ul><li>Tweet @susangiurleo </li></ul><ul><ul><li>Kids with AS are creative, free spirits, funny, silly, artistic, and really just a joy to be with. </li></ul></ul>
  26. 26. Tweet: TannersDad <ul><li>@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. </li></ul>
  27. 27. Tweet @johnnyA <ul><li>Got here late & realize only an Aspie/ADHD could go back and read all the #ASD tweets in one sitting </li></ul>
  28. 28. Shared Article <ul><li>Tweet @lonestar818 </li></ul><ul><ul><li>Top 10 terrific traits of people with autism </li></ul></ul>
  29. 29. <ul><li>1. Rarely Lie </li></ul><ul><li>2. Live in the Moment </li></ul><ul><li>3. Rarely Judge </li></ul><ul><li>4. Passionate </li></ul><ul><li>5. Not Tied to Social Expectations </li></ul><ul><li>6. Terrific Memories </li></ul><ul><li>7. Less Materialistic </li></ul><ul><li>8. Play Fewer Head Games </li></ul><ul><li>9. Have Fewer Hidden Agendas </li></ul><ul><li>10. Open New Doors for Neurotypicals </li></ul> Autism: Top 10 Terrific Traits Shared Article Screenshot
  30. 30. Life With ASD
  31. 31. Tweet @pfanderson <ul><li>My son’s favorite video of what life is like for him is this one:: </li></ul>
  32. 32. Retweeted by @sharon370 <ul><li>Retweets are when someone really liked what someone else said, and so they are sharing it with their friends and community </li></ul>
  33. 33. YouTube: In My Mind <ul><li>Video about life with Aspergers as a teen who likes himself pretty well. </li></ul>
  34. 34. Tweet @rainbow_goddess <ul><li>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!” </li></ul>
  35. 35. Tweet @datafaucet <ul><li>@gitchel My difficulty assimilating it is probably due to poor working memory huh? </li></ul>
  36. 36. Tweet @gitchel <ul><li>@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. </li></ul>
  37. 37. Tweet @petsaretalking <ul><li>Any advice about helping an AS kid deal with bullies? </li></ul>
  38. 38. Tweet @teenautism <ul><li>For #ASD experiences with bullying: </li></ul>
  39. 39. Teen Autism: Bullying <ul><li> </li></ul>
  40. 40. Tweet @KimDeanArt <ul><li>@justthatgirl101 My Aspie used to get very emotional watching the Simpsons, he didn’t like the cruelty in the show, it disturbed him </li></ul>
  41. 41. Tweet @rainbowmum <ul><li>@MelinaTomson Day 2 after change of aide my son had a massive meltfown in lunchroom. All the convincing needed. HANG IN THERE!! </li></ul>
  42. 42. Tweet @gitchel <ul><li>NOT going into perfume store. My head would explode. Wife can go alone. </li></ul>
  43. 43. Tweet @gitchel <ul><li>@codeman38 I also stay out of the laundry soap section of the supermarket and Burlington Coat Factory </li></ul>
  44. 44. Tweet @asdquefty <ul><li>Why do OSes insist on defaulting to maximum brightness? It’s a computer, not a flashlight, and it hurts my eyes. </li></ul>
  45. 45. Tweet @coop179 <ul><li>@jenrik06 be careful of the video games … learn from my mistake, that’s all my son does and talks about now </li></ul>
  46. 46. Tweet @jenrik06 <ul><li>@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 </li></ul>
  47. 47. Tweet @gitchel <ul><li>@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 </li></ul>
  48. 48. Tweet @TannersDad <ul><li>What does everyone feel about restraints? I have gone to school a couple of times & Tanner has been tied to a chair? </li></ul>
  49. 49. Tweet @autismfamily <ul><li>Other topics for autism twitter day is bullying, rage issues, locker room problems, lunch at school, depression, sensory diet and fidgets #ASD </li></ul>
  50. 50. Tweet @taless <ul><li>The hardest question I have had to answer since my son started “talking” was “What did I do wrong that God made me Autistic? </li></ul>
  51. 51. Divorce
  52. 52. Tweet @diy_pam <ul><li>Concepts of custody, timeshare, support don’t fit special needs of divorcing autism families </li></ul>
  53. 53. DIY Divorce <ul><li>December 16, 2008; Florida Divorce & Special Needs Children - It’s Autism Month </li></ul>
  54. 54. Tweet @autismfamily <ul><li>@diy_pam we went with custody evaluation since I wanted supervised visits, long process but got it, court told Dad to shave beard </li></ul>
  55. 55. Education
  56. 56. Tweet @autismvox <ul><li>My son likes the routine of going somewhere else to school and being with other kids -- homeschooling is not for him. </li></ul>
  57. 57. Tweet @susangiurleo <ul><li>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 … </li></ul>
  58. 58. Tweet @rainbowmum <ul><li>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. </li></ul>
  59. 59. Tweet @specialedsolved <ul><li>@taless Don’t forget to tell the school, not only for cheeres, but to assure goals are moving forward too! </li></ul>
  60. 60. Tweet @albruns <ul><li>@MelinaTomson I think there is a fine line between consistent staff and dependency. It depends upon how teaching is delivered </li></ul>
  61. 61. Tweet @pfanderson <ul><li>@emptyenvelope What finally worked was getting him a Macintosh and letting him get involved w/ online social nets 2 practice engagement #ASD </li></ul>
  62. 62. Tweet @specialedsolved <ul><li>@pfanderson Aaahhh, learning with a purpose, just what I was working towards at a parent/client’s IEP meeting today! </li></ul>
  63. 63. Tweet @pfanderson <ul><li>@specialedsolved I’ve been saying this 4 decades. Used to teach women keyboarding by having them type fave recipes. Lrng w/ purpose=WIN </li></ul>
  64. 64. Tweet @specialedsolved <ul><li>@albruns teachers need more resources to collect data. It’s where the parent comes. Parents can ask for more than the teachers can. </li></ul>
  65. 65. Tweet @bwwojci <ul><li>Excel tool for teachers to chart and analyze data </li></ul>
  66. 66. Special Education Assistive Technology <ul><li> </li></ul>
  67. 67. Tweet @autismfamily <ul><li>ABCs = antecedent, behavior and consequences, telling parent kid had behavior issues is not enough, what transpired beforehand - need data </li></ul>
  68. 68. Individualized Education Plans (IEPs)
  69. 69. Tweet @specialedsolved <ul><li>Did you know that data is the key to your IEP?Want changes in your child’s program? Ask (in writing) for the data. </li></ul>
  70. 70. Tweet @JillShaw <ul><li>@MelinaTomson Have you asked for a parent advocat to be present at the IEP with you? They can be a great resource. </li></ul>
  71. 71. Tweet @specialedsolved <ul><li>Did you know that spending 5 minutes per week asking staff in writing about IEP progress gets amazing results? Rotate the staff </li></ul>
  72. 72. Tweet @specialedsolved <ul><li>@sensorynanny Many concepts are difficult to sell at the IEP. I definitely prefer selling concepts to staff 1:1 before meeting </li></ul>
  73. 73. Other Tips
  74. 74. Tweet @modelmekids <ul><li>@susangiurleo What do you recommend for child who is tired at end of day and refuses to do homework? </li></ul>
  75. 75. Tweet @ susangiurleo <ul><li>@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. </li></ul>
  76. 76. Tweet @pfanderson <ul><li>@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 </li></ul>
  77. 77. Tweet @liz4cps <ul><li>We love dogs; have a border collie, but son likes the cats better - almost ignores the dog! curious about dog therapy </li></ul>
  78. 78. Tweet @mmiller20910 <ul><li>@liz4cps There are therapy dogs, guide dogs, and assistance dogs. Some simple definitions: </li></ul>
  79. 79. Tweet @MyPreciousKid <ul><li>@sensorynanny mine is a sensory seeker too - trampoline helps a lot </li></ul>
  80. 80. Tweet @behaviorcounts <ul><li>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 </li></ul>
  81. 81. Tweet @emptyenvelope <ul><li>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 </li></ul>
  82. 82. Tweet @tendrel <ul><li>Squeeze machine directions - woot! </li></ul>
  83. 83. Diet
  84. 84. Tweet @autismfamily <ul><li>@jennyhopkins have you searched twitter through and input gluten free, dairy free, many on twitter follow same diets </li></ul>
  85. 85. Tweet @hellokittiemama <ul><li>@ericasteller GFCF diet a HUGE hit in my house. Takes work but worth it. Its lunchtime someplace so I’ll space the vivid details! </li></ul>
  86. 86. Tweet @ericasteller <ul><li>@hellokittiemama Just now noticed your reply to my GFCF #ASD diet question. THANKS! Visiting now! </li></ul>
  87. 87. The Bon Bon Gazette <ul><li>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. </li></ul>
  88. 88. Tweet @pfanderson <ul><li>@denipath4change My son, too. Cut food additives, esp dyes, and suddenly he came ALIVE mentally! </li></ul>
  89. 89. Tweet @denipath4change <ul><li>@navi I have to do high protein, low carb - no potatoes, rice, corn … not grains … and I do better. Carbs give me brain fog </li></ul>
  90. 90. Success
  91. 91. Tweet @KimDeanArt <ul><li>“ For success in science and art, a dash of autism is essential” -- Hans Asperger </li></ul>
  92. 92. Tweet @castewar <ul><li>It’s been argued that Glenn Gould has/had Aspergers - if you’ve read about him, you’re probably inclined to agree. </li></ul>
  93. 93. Tweet @denipath4change <ul><li>Trying to make the point that asd in adults is not a new thing and didn’t stop many folks from being successful </li></ul>
  94. 94. Tweet @castewar <ul><li>Gary Neuman has Aspergers - think about that when listening to his lyrics. </li></ul>
  95. 95. Tweet @casteware <ul><li>Peter Tork of the Monkees has Asperger’s - not as overt in his music as Gary Numan. </li></ul>
  96. 96. Tweet @TammiR <ul><li>Well known person w/ autism: Temple Grandin, Darryl Hannah, Stephen Shore </li></ul>
  97. 97. Tweet @dbrodbeck <ul><li>@autismfamily Temple Grandin studies animal behaviour, and I study animal cognition, coincidence? Well, yeah, I guess so … </li></ul>
  98. 98. Tweet @denipath4change <ul><li>@castewar lots of famous folks, einstein, edison, gates, man silicon valley types, lots of those in academia </li></ul>
  99. 99. Tweet @casteware <ul><li>Dan Akroyd has made mention that he has Asperger’s, but it’s never been formally confirmed. </li></ul>
  100. 100. Tweet @twitterbo <ul><li>Famous People with Autism … </li></ul>
  101. 101. List of Famous People with Autism <ul><li>Love to Know: Autism: Famous People With Autism: </li></ul>
  102. 102. Books & Reading
  103. 103. Tweet @mommysescape <ul><li>@autismfamily the curious incident of the dog in the night time </li></ul>
  104. 104. Tweet @mamacate <ul><li>@TannersDad I’m reading Married With Special Needs Children -- worthwhile IMO </li></ul>
  105. 105. Tweet @shakingsystem <ul><li>@navi Try reading Bock’s book. The connection between the A’s (autism, adhd, allergies, and asthma). </li></ul>
  106. 106. Tweet @albruns <ul><li>Anyone read Autism’s False Prophets by Paul Offit? </li></ul>
  107. 107. Tweet @hellokittiemama <ul><li>@TammiR Have you read Born on a Blue day - author is AS and has kinesthesia. Excellent book. </li></ul>
  108. 108. Tweet @queenuniquemvp <ul><li>Read! “Autism and Race parents, Advocates Seek More Prompt Diagnoses of Minority Children“ </li></ul>
  109. 109. Resources
  110. 110. Tweet @Dianne_ <ul><li>@MyPreciousKid #ASD diagn tool. http: //tinyurl .com/6cb8ag </li></ul>
  111. 111. Australian Government <ul><li>Helping Children with Autism: </li></ul>
  112. 112. Tweet @TannersDad <ul><li> </li></ul>
  113. 113. Autism Bites <ul><li>& Rocks & Bounces & Yells </li></ul><ul><li> </li></ul>
  114. 114. Tweet @AdonyaWong <ul><li>“ Temple Grandin on Encouraging Kids With Autism” </li></ul>
  115. 115. Temple Grandin from Education Week <ul><li>EdWeek: Temple Grandin on Encouraging Kids with Autism: </li></ul><ul><li>“ Teachers tend to focus on the disability,” Grandin said. </li></ul>
  116. 116. Tweet @mmiller20910 <ul><li>Insurance coverage for autism -- state by state </li></ul>
  117. 117. Autism Votes <ul><li>Autism Votes: State Initiatives (Insurance): </li></ul>
  118. 118. Tweet @lizditz <ul><li>@TannersDad educate your local police/fire about your child -- most FD PD very receptive to education re special populations </li></ul>
  119. 119. PA Premise Alert <ul><li>Autism 101 for Police Officers: </li></ul>
  120. 120. Tweet @autismfamily <ul><li>@denipath4change measure autistic traits in adults #ASD fun online test </li></ul>
  121. 121. Newsweek - The Autism Spectrum Quotient <ul><li> </li></ul>
  122. 122. Tweet @twitterbo <ul><li>Autism and Schizophrenia share common origin, review suggests … </li></ul>
  123. 123. ScienceDaily <ul><li>Autism and Scizophrenia share common origin, Review suggests: </li></ul>
  124. 124. Winding Down
  125. 125. Tweet @doctorious <ul><li>@autismfamily Just checking in on #ASD status -- looks liike it is still in full force? Any way to get traffic numbers from Twitter? </li></ul>
  126. 126. Tweet @navi <ul><li>Where are w coast @asd tweeters? Bed earlier than me, 2am in MI? Lol </li></ul>
  127. 127. Tweet @TannersDad <ul><li>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. </li></ul>
  128. 128. Links Mentioned
  129. 129. Background Information <ul><li>Autism Family: </li></ul><ul><li>Autism Family: </li></ul><ul><li>BellaOnline: Autism Spectrum Disorders: / </li></ul><ul><li>Causecast: RSVP For Autism Twitter Day: </li></ul>
  130. 130. Sources Mentioned <ul><li>Australia: Services for Children with Autism: </li></ul><ul><li>Autism Bites: </li></ul><ul><li>Autism Quiz: </li></ul><ul><li>Autism Safety Products </li></ul><ul><li>Autism Votes: </li></ul><ul><li>Behavioral Analyst Certification Board: </li></ul><ul><li>Bonbon Gazette: </li></ul>
  131. 131. Sources Mentioned <ul><li>Child Development Partners: </li></ul><ul><li>Crisis Prevention: </li></ul><ul><li>DIY Divorce: Autism: </li></ul><ul><li>EdWeek: Temple Grandin on Encouraging Kids with Autism: </li></ul>
  132. 132. Sources Mentioned <ul><li>Future of Homeschooling: </li></ul><ul><li>Grandin: Squeeze machine directions: </li></ul><ul><li> </li></ul><ul><li>Mary's Gone Crackers: </li></ul><ul><li>Pennsylvania Premise Alert: Autism: </li></ul><ul><li>Science Daily: Autism and Schizophrenia: </li></ul>
  133. 133. Sources Mentioned <ul><li>Teen Autism: Puberty: </li></ul><ul><li>Wired: Autism Test: </li></ul><ul><li>Youtube as a Repository for Autism and Asperger Videos: </li></ul><ul><li>Youtube: In My Mind: </li></ul>