Tips for using Twitter for Autism Support

I started using Twitter almost three years ago, first out of curiosity, then as a marketing tool for my photography business, and then in August 2010, primarily as a way to communicate with other parents of children with autism. It's been an excellent resource, and the advanced search features that allow me to search for words in tweets based on location have helped me build a great network of autism parents, both local and worldwide. In fact, our support group is populated entirely with people from Twitter at the moment!

Because of the isolation so commonly (maybe even universally) felt by parents of children with autism, especially their primary caregivers, social media like Twitter and Facebook and the new World Autism Community are important resources for people afraid to leave their child with someone else, go to play-dates outside of home, too embarrassed by a messy home to invite people over, or too afraid their child will bolt in a crowded place and get lost or injured. Autism parents, you know what I'm talking about. Social media gives you the opportunity to engage with other grown-ups. Possibly the most personal interaction available to them. Autism has taken over my life, and I need to have others who are in the same place as I am.

Because it's so important to me, I thought it might help someone to have some tips on how to use Twitter to it's fullest potential to build your own online autism community. I'm going to skip Facebook, because you probably know how to use that already.

As I already had been using Twitter for marketing, identifying engaged people in the central Ohio area who might be in need of a wedding photographer or baby photos, I already had some tools in my Twitter tool-box. First and foremost, I wanted to build my local connections. I went to the advanced page on Twitter Search and searched for keywords 'autism' or 'autistic' within 50 miles of zip code 43235. That's it. If you use Google Reader or some other RSS aggregator, Twitter provides an RSS feed so you can subscribe to this search. I've located 22 other autism parents in my area on Twitter this way.

Next, as you find them, set up a list and add your new contacts to it, like my cbus_autism list here. As you start adding non-local autism contacts, start another list for them, like my autism list here. Twitter clients like Hootsuite and Tweetdeck (that you can use on your desktop or on a smartphone) will let you put these lists in their own columns to help them stand out from other tweets.

Something that I've found useful recently, when you add someone from a search, send them a @reply and let them know that you're following them and why. Like, 'Hey @so_and_so, I saw you tweeting about your son's GFCF diet. My son is autistic too, so I'm following you now.' This will help make sure they follow you back and let them know you're not following them to try to sell them something.

Next, make sure you identify yourself on your profile. Mention autism in your Twitter mini-bio. Some folks get lots and lots of people following them, and they have to decide in a moment whether or not to follow someone back. When someone follows me, I check their profile to see if they mention autism or photography or they are local to me. Most other folks I don't follow back unless they say something to me.

Once you've got your local network in place, you will start seeing retweets from people in the national autism community and you can start building your national network.

Use these techniques to build other networks too, even if your primary interest right now is autism, build other networks. I've been introduced to other local autism parents by my local photography contacts. Plus, it's nice to have your life not 100% defined by your child's autism. Maybe just 80%. :) But that's actually another post that I'm going to write later.

Once you have these networks of people with whom you share the trait of being the parent of a child with autism, use it. Tweet about what your kid is doing, tweet about your challenges and frustrations, tweet about therapy, even just waiting in the waiting room while they're in therapy. Upset because your kid smeared their bedroom with feces? Tweet about it, I guarantee you that you're not alone. Tweet about autism related books and films. Tweet about autism related events like AMC's excellent Sensory Friendly Films or support group meetings. Tweet links to articles you've read related to autism or your blog posts.

Tweet about other stuff too though, if you start with the cliche and oft mocked 'this is what I had for lunch' sort of stuff, eventually you will evolve a more natural and meaningful tweeting style. The most important thing on Twitter though is to engage people. When someone says something that you can identify with, or that you're curious about, respond to them. Always broadcasting and never receiving or engaging is no way to build a relationship with these people who can become your new best friends (in real life even!)

I hope this helps you find as many awesome people as I have. Follow me and say Hi!

An Update on Joseph's iPod

This being an update, you can read the first post about Joseph and is iPod here.

Joseph has had his iPod for a little over a month now (a 2nd generation, 8gb iPod Touch that we bought used on craigslist for $75), and I think he's gotten pretty used to it (and so have we). Angry Birds came off pretty quickly because he didn't want to do anything else. For a while, every time we started an educational game on for him, he wouldn't even look at it before he hit the home button and started up a movie or an episode of Spongebob. At this point though, he's playing his games more than he's watching movies, particularly the puzzle games. I might try putting Angry Birds back on soon. I put Angry Birds back on, and he's either not noticed or doesn't care. It's in a folder with other entertaining time-wasters.

Something I discovered in the meantime is the excellent blog/website Apps 4 Children With Special Needs. Gary James writes great reviews of apps, including detailed video walk-thrus. This is wonderful, because even if an app only costs a couple of dollars, it's nice to be able to see it before you buy it so you can have a better idea if it's something your kid is going to be interested in. I've seen some apps that were excellent concepts, but poorly executed, so it pays to do your research. When our tax refund came, I bought $50 of iTunes gift cards, of which I've spent about $35, and most of the apps I've bought he likes.

Joseph prefers to use his iPod on his own. If the app requires help from an adult, at this point he is usually not interested. So good apps for Joseph = Apps that Joseph can figure out on his own.

Some of the apps that Joseph particularly likes:
Puzzle Me - Jigsaw puzzle game with various levels of difficulty available.
Wood Puzzle - Exactly what it sounds like. Has a counting element, after puzzle is completed, will say "Three Chickens" or something like that.
Speech with Milo, Verbs - A cartoon mouse teaches verbs (non-concrete language is a challenge for Joseph). They also have one for Prepositions.
Monkey Preschool Lunchbox - Monkeys play games that teach various skills such as counting, colors, etc.
Cosmic Top - A psychedelic top that spins in space and makes whirring noises.
First Words Deluxe - Drag letters that look like Scrabble tiles to spell words.
VolaFriends, Faces - Select a face from a simple black screen with 9 faces showing different emotions. The face enlarges, an animation of the expression is shown along with a voice saying what emotion it is.
Bob Books - Simple stories that teach some basic spelling interactively.
Any of several memory matching games. He loves these.

These all work on iPod. We've gotten two or three apps that are iPad only by accident, like the new Milo app.

Kindergarten.com has a huge catalog of apps designed for kids with autism. I've downloaded them all but can't seem to get Joseph interested in them. I think this is a failure on my part, rather than the fault of the apps, and I'm sure that eventually they will be helpful to him.

The Otterbox Defender case that Joseph initially ruined was replaced for free by Otterbox and has survived since then. The silicon tab that protects the dock connector muffles the sound a lot, but we just leave it open when he's using it, easy enough. It's been dropped a couple of times and isn't broken yet (knock on wood). The Otterbox Defender is also available for iPhone and iPad.

At Joseph's parent/teacher conference a couple of weeks ago (no news from the conference, it doesn't warrant it's own post), I told his teacher about the iPod and told her we would send it with him to school so they could use it as a learning tool and/or motivator. I'm not sure how much or what they're doing with it with him, but it usually comes home with the battery drained, so it's getting used one way or another.

I listened to a podcast from The Coffee Klatch on the 13th about using iPads for kids with autism. Shannon Rosa, the guest being interviewed, talked about how before she won an iPad in a school raffle, she always thought of them as being not so different from large iPhones, which is what I've thought since I first saw them. She said she had an iPhone and she let her son play with it sometimes. But she said the iPad really is more than a big iPhone and it has opened up new opportunities for her son and is easier for him to use. Not to mention, some apps that I think would benefit Joseph only work on the iPad's larger screen. The podcast rekindled my interest in getting Joseph an iPad.

I have a couple of codes for an app called Word SLapPs, but it only runs on the iPad. If you have an iPad and think your child would benefit from this app, please leave me your email address and I'll send you a code (I only have two available).

How much he is learning remains to be seen. But if nothing else, he's playing with puzzles and stimulating his mind without the baskets of pieces to get lost. It's engaging him and that's a good thing. :)

Feedback Meeting at Children's Hospital Autism Center

Sorry, I should have written about this weeks ago. I've been neglecting the blog, I'm going to try to update more regularly. I'm going to be publishing an update about the iPod and how that is going shortly (spoiler: it's great!)

After Joseph's assessment in December at the autism center, I went back for the feedback meeting to get their impressions. They have confirmed the diagnosis of autism, and are classifying him as severe. Their said this is not because of the severity of his individual symptoms, but rather because of the large number of symptoms he exhibits. They said that the symptoms seem to be slight, and they are optimistic that he will be able to overcome them. He wasn't entirely cooperative during the intelligence test, but when they threw out one anomalously low scoring category, his IQ is testing in the average range.

So here's our plan. We don't want to take him out of Dublin's schools, especially from his current teacher and classroom. EIBI, Early Intensive Behavior Intervention, which is derived from Applied Behavior Analysis, is considered to be the most effective treatment for kids with autism (in general, there are of course plenty of exceptions). But it requires 20 to 40 hours a week for maximum benefit. We could get that if we took him out of public school and sent him to a center like Haugland, Step by Step or Helping Hands or took him out of school and "home-schooled" him, which would allow us to use Ohio's $20k a year Autism Scholarship to pay for the aides to work with him. Or we can try to do it at home, after school, with the help of unpaid aides (Medicaid covers everything but the aides who do the actual therapy sessions), which is what we want to try to do right now.

The next step, they will do an intake assessment with Joseph at the autism center to begin designing his treatment plan.