9.30.2013

Dear Anti-Vaccine Concern Troll

I left a version of this comment on TPGA Facebook. But it bears repeating. Because there are still too many people who do not consider themselves "anti-vaccine" yet argue that vaccine risks are too high. Here's why they're wrong. Dangerously, badly wrong.
Dear Anti-Vaccine Concern Troll,

By attempting to distance yourself from "anti-vaccine militants" you are Concern Trolling whether you are aware of it or not. Here's what's what:


1) Vaccines save lives

2) Most parents are not old enough to remember all the sickness and death that vaccines prevent, therefore anti-vaccine agitators take vaccines for granted and feel free to rail against them. 

3) There are rare cases (due to allergies, specific immunodeficiencies) where people cannot be vaccinated, but they are (again) rare and the rest of us need to stay vaccinated to keep those folks (and babies too young to be vaccinated) healthy.

4) Vaccine reactions are real but extremely rare and do not include autism (autism is genetic & by the way: stop demonizing Autistic people like my son). Consider: you could use a risks/benefits analysis to argue against people riding in cars, but with cars the risks are statistically much more outsize, and few stop riding in cars even though we're aware of the risks because we value the benefits too much. Which is how it should be with vaccines! However (again) vaccine benefits have become nearly theoretical, in the US at least.

5)  Now vaccine-preventable diseases are resurfacing and people are getting sick and dying, in part due to well-meaning but dangerously misguided people like you. So, no. Again, no. 

If you need a longer and more in-depth debunking of anti-vaccine blather, here's the best summary I've read of late: Dr. Rachael Dunlop's Six things to say when you're faced with anti-vaccination rhetoric. Share it with gusto:
http://www.mamamia.com.au/news/anti-vaccination-rhetoric-what-to-say/
And who can resist Buffy reminding us that vaccines are not just for kids -- adults need to stay up on their tetanus, diphtheria, & pertussis (tdap) boosters to protect babies in their families & social circles:  
"...parents who don’t vaccinate their children tell you they’re making a purely personal choice. This is, of course, technically true, in the same sense that driving after having a few beers is a personal choice. As the mother of the 10-month-old hospitalized [with measles] in San Diego said, if people want to make that choice, they should go live on an island with its own schools and doctors: 'Their own little infectious disease island.'"
If you want all of our kids to stay healthy and safe, do what you can to counter anti-vaccine concern trolls.

9.27.2013

How iPads & Apps Can Help Autistic People Like Leo - As of September 2013

This is an outline for a three-hour iPads and Apps workshop I recently gave for the excellent San Francisco organization Support for Families of Children With Disabilities. The outline's backbone is consistent with many of my past presentations, while updated in several areas because things move fast in the iDevices and apps worlds. Case in point: the presentation was a few days before iOS 7 was released. (All I'll say about iOS 7 is that making things more subtle is not a great idea for visual people -- Leo is still having trouble opening his iPad, because he can't locate the swipe area. So while iOS 7 may be prettier, it's also less accessible.)

Oh, and I've also updated and verified all the apps & prices in our Recommended Apps Spreadsheet.

If you missed this workshop, I've got a couple other iPad workshops coming up, one local and one in the UK. And if you have any questions about the info below -- seeing as it is fairly bare bones -- do leave a comment.

Yes, iPads and Apps
Really Can Help Individuals With Special Needs

Support for Families \ September 14, 2013

Shannon Des Roches Rosa | www.thinkingautismguide.com | www.squidalicious.com
Leo tolerating post office lines and tedium,
thanks to his iPad.

Tablets: Tools, Not Miracles

  • My autistic son was instantly able to learn and entertain himself independently [though, ahem, less so with iOS 7 redesign]
  • However, tablets are not for everyone. Evaluate tables and apps before buying
  • Tablets encourage presuming competence by enabling visual and alternative communication and learning
  • Competence expressed and recognized increases self-confidence

Benefits: Accessibility and Convenience

  •  No cursor analogy – direct touch screen
  • Fine motor ease – stylus/mouse not required (and switch accessories now available)
  • So very portable (but invest in a good case)
  • Can replace backpacks – and cupboards -- of activities
  • App content is not static, contents updates are often free
  • Siri encourages independence and articulation (iPad 3+ only)

Benefits: Learning

  • So much more than an AAC device!
    (Non-dedicated device status = issue, less so with Guided Access)
  • Apps are organized, accessible, predictable framework
  • Apps break learning down into discrete chunks, topic areas
  • Learn without needing to read, including read-aloud books
  •  Learn independently or with support (but monitoring important, with any kid)
  • Incidental learning opportunities

Benefits: Social and Play

  • iPads are cool, they attract other kids – including siblings
  • Can support social skills, formally and informally
  • Custom story apps allow preparing for transitions, routines, meeting new people –
    or re-experiencing said scenarios
  • Face-blindness (common with autistics): labeling and other photo-content apps can enable associating names and characteristics with people
  •  Independent leisure time: Learning activities, games, videos

Best Practices

  • Evaluate thoroughly before buying: Tablets are expensive, apps are expensive
  • Get professional evaluation for AAC apps
    • Different systems work for different users
    • If long-term AAC use is expected, do not want to re-learn communication system
  • Get fully informed before upgrading, e.g., iOS 6 deleted YouTube app,

Overuse and Abuse?

  • What about study: “Autistic Kids Obsess Over Screen Technology”? [1]
    • Autistic adults say “Yes, we’re visual and very focused, why not explore how to harness these traits productively.”
  • Savvy kids can be experts, help other kids, mentor them.
  • For 1:1 kids, independent is good, not bad!
  • Valid concern for those who need support to manage screen time

When iPads Are Not in Your Budget

  • Go through insurance, school district – write into IEP
    • AAC evaluation
    • SLP recommendation
    • Research (longitudinal studies are ongoing)
  • Fundraise: Community/Online – it works! (Small commissions charged)
  • iPad Donation Charities – watch out for scams

iPad Protection – Insurance, AppleCare, Loss

  • All iPads come with 90 days of phone support and one year limited warranty
  • Insurance (3rd party): Protects against damage and physical loss
  • AppleCare: Service, support for technical issues, up to two years
  • iTunes remembers purchases, will let you re-download for free

iPad Protection – Cases, Covers, Other Accessories

  • Cases: Protection vs. Convenience
    • All-Purpose Cases: ZooGue, Targus, InCase, Shutterfly (custom photo)
    • Keyboard: Logitech, Targus, Zagg, Brookstone (can be bulky)
    • Protective: Otterbox Defender, GumDrop Military, Trident Kraken, Griffin Survivor

Apps Demonstrated



[1] http://psychcentral.com/news/2012/01/26/autistic-kids-obsess-over-screen-technology/34118.html

9.21.2013

Please, Disneyland: Do Right By Your Autistic Fans

Disneyland train! Disneyland train! (Feb 2013)
Update 10/5/13: Looks like the new policy will indeed acknowledge diversity in disability and offer differing accommodations as a result. Woot! So grateful and relieved.

Leo is singing a song about Mickey Mouse and Donald Duck right now, because all things Disneyland are never far from his mind. He asks to go to Disneyland every single day of his life, and if he hadn't been singing that song, he'd probably have been watching California Screamin' roller coaster videos on YouTube, or looking through pictures of his own 2011 trip to the Land of Mouse.

Leo really, really loves Disneyland. Really loves it. It is his happy place, one of the few places I know he will have a good time all day long, one of a handful of not-our-home places I feel fully comfortable taking him.

That is why I am so downhearted about the recent announcement that the park will be discontinuing the Guest Assistance Card that made Leo's trips to Disneyland possible. If Leo doesn't have a GAC, we can't go. End of story.

I've written about Leo's adoration of The Happiest Place on Earch before, and why the Guest Assistance Cards matter.
Leo's visit was a huge success, and Disneyland turned out to his Land of Yes. He got to do exactly what he wanted all day long, directing the action according to his interests and impulses -- an unprecedented freedom for a boy with a heavily structured life. He was also never bored, which can be an issue for people with communication challenges. Because of a Guest Assistance [Card] the Mouse thoughtfully provides for people whose behaviors make it difficult to wait in lines, Leo could get right back on any ride he liked, as many times as he wanted.
You have to understand: our love of the GAC is not because we get to skip lines and blow raspberries at all the chumps who don't. Skipping lines is not a convenience but a necessary accommodation for our boy. Because he is autistic. Because of his specific disability.

Leo can wait in lines, but not always. Not lines of Disneyland length. Not without melting down due to the crowds, the noise, the expectation based on previous experience that he will not have to wait in lines longer than 20 or so minutes. Without the GAC, Disneyland is effectively barred to my son.

Even with the GAC, it can be difficult -- there is no GAC for park entry lines, so when those lines were longer than he was used to the last time we visited, Leo ended up having a spectacular meltdown. Please believe me, he really does need GAC accommodation; he doesn't deserve to be a public spectacle just because of his neurology.


I understand that Disney is planning an alternative to the GAC: the Disabled Assistance System (DAS), which includes a system of going to kiosks to get return times for the most popular rides. Which incorporates back-and-forth time for DAS users only. People with disabilities and their families only. Which means additional complications and fewer ride times for those for whom going to Disneyland is already much more complicated and so already includes fewer ride times.


I have heard from several different sources that Disneyland discontinued the GAC because people were rampantly taking advantage of it, either falsely claiming disability or in some cases hiring disabled people so their non-disabled kids could skip lines.

Happiest boy, happiest family (Feb 2013)
My reaction: So what? There will always be losers people who game accommodation systems. But in a fair and just society, you don't take away (or complicate) accommodations for people with disabilities just because non-disabled people are taking advantage of them and making other non-disabled people mad. Especially as I've never heard from any of our Disneyland-loving, GAC-using friends about being disadvantaged due to too many other GAC users.


There are so many other things that make Disneyland wonderful for Leo: Hotel pools that open at 9 AM. Cheerful and accommodating staff. Beer in California Adventure (OK, OK -- that one's for me). But the GAC is the Disneyland matter that matters most for our family. I will continue to monitor the DAS as it develops, and learn from others about whether it could work for us. I hope so, because I had just started to plan our next Disneyland trip. If we shouldn't go, I need to know soon.

9.16.2013

On Autism Murder Apologists

This is my Leo. He's 12 years old. He's autistic. Could you look him in the eye and tell him you understand why parents kill autistic kids like him, or indeed any disabled kid who needs full-time support?

You couldn't?

Is it because you assume he wouldn't understand you? (Ahem. Presume competence. How do you know he wouldn't understand?)

Is it because you've learned enough about autism to know that autistic people often find eye contact uncomfortable? (Then why didn't you take the time to find out that Leo isn't much for stereotypes and actually craves eye contact?)

Is it because you're a coward and can only say such things on the Internet? Because you mistakenly assume autistic kids and adults don't read what you write -- or if they do, then that proves they're not like your child and so don't get to join your conversations about their lives being devalued?

Or is it because you are a decent person and could never imagine doing such a thing, and understand that telling another person (or group of people) why their life isn't valuable is totally, beyond the pale, nastily, horribly, prejudicially, morally wrong?

I am so tired of people excusing the latest batch of parents who murdered or tried to murder their autistic children. First CBS News released a video justifying the murder of autistic teen Alex Spourdalakis by his mother and godmother. Then Issy Stapleton's mom tried to kill her, though thankfully did not succeed. And now Jaelen Edge and his sister Faith were both killed by their mother. In each case, almost all media outlets pounced on autism as a justification -- even People Magazine asserted that autism drives parents to despair, in the case of Issy. 

What kind of society, media, or community sympathizes with murderers instead of murder victims? Especially when the victims are children? Ask yourself this. Keep asking until you can't imagine autism ever being used an excuse for murder.

We've been fielding murder apologists at TPGA Facebook during these horrible few weeks. And I am just about done with such harmful and misplaced empathy. So I'm going to tell you what I've been telling the people who don't get it, what I wrote at BlogHer last week:
Just because you understand how difficult parenting can be does not mean you understand why someone would kill their autistic child. Those two subjects need to be separated by a brick wall.
That's another one you should feel free to repeat to yourself indefinitely. Keep the above picture of Leo in front of you while you chant, if you need to. Does Leo deserve to be stabbed? Does Leo deserve to be poisoned? Does Leo deserve to be trapped in a car with a couple of charcoal grills while carbon monoxide builds to toxic levels? NO. Neither did Alex, Issy, or Jaelen.

Most autism parents would never even think of harming their kids. Even when times are tough, they know their kids need their love and support, and are their responsibility. But some parents -- due to their own wiring -- may be at increased risk for despicable acts towards their children. When and if that risk is present, you need to ask yourself one final question: Do you want those parents to be constantly exposed to the message that society will forgive them for murdering their autistic children? Or do you want them to absorb that murder is wrong, murder is unacceptable, and that they have other options if they feel they can't continue?

I want Leo to grow up. I want Leo to feel valued. I don't want him to ever hear harmful messages about autistic kids' murders being justified.

I'd be grateful if you'd spread the message that it's not "understandable" to kill my son.
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