Monday, October 24, 2011

My kid is nonverbal, we use an iPad, and I still didn't like that piece on 60 Minutes

Last night there was a piece on 60 Minutes that has everyone in the special needs community talking (or at least tweeting and posting on Facebook).  The segment, which can be viewed on their website, was about nonverbal kids who can use iPads to communicate.

Wait, no it wasn’t.

It was about kids with special needs, primarily nonverbal, who can use the iPads to communicate and for other educational purposes.

No, no.  That’s not quite right either.

Ok, for real this time.  It was called “Apps for Autism”.  And, frankly, that pitch had me annoyed before Lesley Stahl even began her introduction. 

Don’t get me wrong—I’ve got nothing but love for children with autism, and their families.  I’m sure that many of you reading this right now are a part of the autism community.  However, I think that “autism” also has a magical buzzword factor that “special needs” is lacking.  I would have greatly preferred a piece about “Apps for Special Needs” or how about just “Apps for Communication”?  “Apps for Special Education”?  “Apps for Communication, Motivation, Special Education, and then a Celebration”?  I mean, I’m just spitballing here, but if I could come up with those gems in less than a minute, I bet the good folks at CBS could have pitched a more inclusive, although possibly less buzzworthy, story.  It would have been appreciated by the throngs of parents, like myself, who have similarly adorable, nonverbal kids that don’t fall on the spectrum.

So, that  was annoyance #1.    Number 1?  Oh yes, there are more.

The first segment showed a young man named Josh (27 years old) using the app Proloquo2Go (P2G) on an iPad to answer Lesley Stahl’s interview questions.  (This is the app that we have for Maya, by the way, although she’s a bit too young to fully use it—it was pretty cool to see an adult move through it so quickly.)  P2G provided Josh with a voice—he could order food at a restaurant, he could answer interview questions, he could talk to his family.

What a fantastic gift.  Seriously.

But the annoyance #2 actually came right before the scene in which Josh was using the iPad.  The camera focused on Josh’s hand, pointing at letters on a laminated sheet of paper, and the voice over implied in the pre-iPad days, Josh’s only way to have a conversation was to spell out his thoughts, one letter at a time.  Lesley then says “For the past year Josh has been using an Apple iPad as his voice.”

Are we to believe that for 26 years, Josh has used only a (poorly) laminated paper keyboard, and then one day he got an iPad and it changed everything?

I damn well hope not.

If so, I am irate on his behalf.  I really, really hope that he was able to use PECs, or a ProgressiveCommunicator or a TextSpeak generator ---- clearly, he can spell, and these devices are all cheaper than the iPad.  Please, tell me he had something.  Even just a typewriter.

On the flip side, if he did have a device before the iPad (and I do believe he did---did you notice that the laminated paper was in QWERTY format?  This kind of implies keyboard use), then I ask----What’s the deal, 60 Minutes?  This seems like mighty questionable reporting.  I get it---you’re selling the iPad as "The Solution" (this segment directly followed a large piece on Steve Jobs, by the way).  But it seems like you’re heavily lying by omission, to say Josh had to fingerspell or act out his thoughts . . . until THE IPAD came to the rescue . . . when really, many of us who have nonverbal kids are raising an eyebrow and thinking “Really?  How can that be?”

Maya has an iPad, and I love it.  I look at it and I see potential—new apps roll out, and we can buy them and try them and see what works.  However, when she’s fully ready to use an AAC device, I want her to have a true communication device (like this one, from  Dynavox). Why?  Well, those devices are created by speech and linguistics people, fully mapped out and set up for grammar and communication (and really, I’m just repeating what my AT consultant told me.  I don’t know much about that stuff yet, because the time has not come for us). 

Mark my words, I am not an iPad hater.  I think the iPad has a place in education and in communication.  I think that nonverbal children should have early access to an array of items (from PECs to the devices that I mentioned above to iPads) so that their caregivers can find the best way to give each child a voice.  I am very, very grateful for our iPad.  But the way this piece touted the iPad as the tool for communication, counting, motivation, etc, was a little off-putting.  It seemed less like journalism, and more like a commercial.  

At the same time, I’m glad it ran.  I hope that the segment was able to show a large audience that nonverbal people are much, much smarter than meets the eye.  I watched that little boy show off his huge receptive vocabulary and love of opera and I couldn’t help but tear up and think of Maya.  It’s easy for us to know how smart our kids* are, and I like that technology will make it easier for them to show off their skills as they encounter new people. 

*our kids = kids who struggle to express themselves in conversation, regardless of diagnosis


Chicory Blue said...

I so completely agree with what you say about that segment. I was at my sister-in-laws house last night ranting furiously over that segment! It was like 10+ years of (computerized) augmentative communication +poof+ never existed.
I have never seen such bias-such a blatant commercial for something on a show respected like 60 minutes.
I'm still furious.
~Lisa, SLP

Joanne said...

I wasn't too mad about it, but my son is non verbal and autistic. He's not able to use ProLoQuo yet, but we are working toward it. It does seem like the iPad is magical for some autistic kids. For us, the thing that has been the most significant is that it has helped our son point, which has made a huge difference already. Nothing but the iPad has been able to do that.

Wantapeanut said...

My son is non-verbal and autistic. He is 4, and basically just wants to bang on the iPad and push the button. But when he can focus, we've had some success especially with receptive language.

That said, I *totally* agree with your point about Josh. Also, the little girls who suddenly could count? Well, she wasn't counting. She was just watching numbers go by. Attention is step 1, but let's not get ahead of ourselves.

I also felt like this was just another way for people who don't know anything to tell us what we, as special needs parents, should be doing. The iPad is not magic, at least not yet. Like any communication device, my son is going to have to learn to use it effectively and that is going to take time.

My post about this will be up tomorrow :)

Usethebrains Godgiveyou said...

the ipad is multisensory...touch, sound, and realistic pictorial representation of actual objects for kids who may not understand repesentation yet.

And it is touch and go. Previous versions of extraordinarily expensive AAC devices were not so easily manipulated. It may have even been a happy accident that it was more user friendly for autistic kids...but I think the MONEY is the MAIN thing.

Kati said...

I used some of the flashcard apps by on the itouch, they flash the correct answer don't they? My speech therapist says it shows up better on the IPad. I agree, I was absolutely shocked that the 27 year old hadn't seen one of the many AAC devices or PECS boards that have been available for years and I don't believe it. Autism does get people's attention these days and that is probably why they chose it.

Anonymous said...

As an SLP who works in AAC, THANK YOU for posting this! It is unfortuante that parents, SLP's, teachers, etc. have gone to chosing the tool before deciding what features the child needs in a communication system. The iPad has its place and the fact that it has brought AAC to the forefront is amazing. Now is the time the professionals need to stand strong and remember the evaluation process and focus on the language learning of the student. Is there an APP that will allow a child to truly learn language like a typically develop child? Is there an APP for preliterate children that will allow them to say exactly what they want to say, when they want to say it? I haven't come across one yet but we DO have that technology in traditional AAC systems along with the research to support it.

Jodi said...

A. MEN. Thank you for saying this!!!

Anonymous said...

I agree, seems some ppl think only kids who are on the spectrum can not communicate, what about deaf, what about other non-verbal kids ?

About Josh not having a device before the Ipad like a dynovox.. insurance may not have covered it, or they many not have had insurance, and an Ipad is much cheeper that the dynovox.

BClark said...

I too have a non-verbal child and I love the Ipad and what it has done for her. HOWEVER, frustrated me about the show was that is basically states that this technology is for autistic children. What about the thousands that are non-verbal WITHOUT autism. I am trying to contact 60 minutes and have them correct this error in reporting.

Michael Leventhal said...

I love your comment "I hope that the segment was able to show a large audience that nonverbal people are much, much smarter than meets the eye." Among my most poignant teaching memories are those occasions when an older, pre-verbal student experienced a breakthrough... finally understood that they had a tool that empowered them....finally

Gaining a new perspective of the person "inside" the label, is a jarring but positive experience even for a seasoned educator. The abilities and personality that emerge during computer and touch screens activities offers deeper insight into students abilities and appreciation for the frustration of living with communication issues.

I attended the NYC screening of "Wretches and Jabberers" a wonderful film that followed 2 adults on a world adventure after they mastered newly acquired communication devices. Seeing this film should be mandatory by every educator working with autism. Our videographer "CJ" Jones, an advocate who is making a film on the parental experience, said that "W&J" was an eye opener... even for him.

I understand your frustration and, perhaps, outrage when the Media doesn't quite get things right. But, for the sake of the kids, I'll take what I can. At least the Public is thinking about the topic... and,like me, paying more attention to what folks like you have to say.

julia n said...

Good for you, Dana. I agree with you it was a bit infomercially. I did tear up as well at one point. Thank you for being the critical thinker on this!!

Anonymous said...

Well said. You have expressed your point so eloquently and with such dignity. Thank you for speaking up for our children.

Claire said...

I'm more bummed that 60 Minutes only spent a brief time on the topic and only mentioned 3 apps by name. You'd think a segment called "Apps for Autism" would have actually been about more than 3 apps (really only about 1 or 2 of them!). When I originally looked into AAC, I was told the Dynavox was $6000. I looked at your link to them, and if there is a price, it is well hidden. We have an iPod Touch with P2G on it for my daughter. It cost less than $500 for equip and app. We could barely afford it. We could NEVER EVER afford a Dynavox. I enjoyed seeing Josh use the iPad, especially how happy he appeared with being able to communicate with it.

Until there is paid-for treatment for autism, I'm jumping for joy over the iPod. I had to quit working so my kid could have Medicaid to get speech therapy and OT. We squeeze 3 hours a day of ABA out of our school district. When I was working, I thought the insurance from my work (I worked for a health system!) would at least pay for the speech services, but they didn't cover services for "initial acquisition of speech", nor did they cover ANYTHING if it related to autism. To get her the recommended number of hours of ABA, it would have cost the amount of a new Masarati each year -- $120,000.

So yeah, I'm glad for a glimpse of success shown on 60 Minutes, but I'm THRILLED TO DEATH about an affordable AAC option for my kid in a world where things cost a bizillion dollars just because *some* insurances will pay for it. If there was no insurance for anyone, rates would have to be a bit more reasonable.

Shannon said...

"apps for autism"... it was the alliteration that 60 minutes couldnt resist.

Scrumptiously Small said...

Have you tried the app First Then Visual Schedule? I'm an editor at The Recapp, an app review website, and we recently reviewed this app, among others.

Mary Georger
Editor, The Recapp

Unknown said...

I love my daughters iPad and ProLoQuo but I can not take it everywhere we go. She is a little developmentally delayed and completely non-verbal but she is a very active kid. We take her swimming, she's in soccer and she does highland dance. She cannot use the iPad when she does any of those things or other things that we do.

I do not know sign language but I am trying to teach her what I do know and have been trying to learn for myself. People have been signing for many more years than a lot of these other devices have been around. I get frustrated when people say that the iPad is the only way to go.

My daughter's teachers have always just wanted to use the iPad and not sign but that doesn't work for us at home. Her iPad is usually almost dead after school because she has used it for 6 hours already. So we can not even use is at home until it gets charged.

We sign for her so she will sign back to us(as well as talk to her-just in case she someday will be able to talk for herself). I don't understand why people are so against having her sign when that is something she can take with her everywhere (her hands). We also have used PECs but again that can not go everywhere with her.

Dana said...

Jennifer, this is why:

True communication for kids with CCN will include everything.

Anonymous said...

Hi. I enjoyed your comments, which I have just come across! My daughter also uses makaton. Her coordination is not great and so the signs are not always accurate, but we get there! She also uses an electronic device which is clunky, dumpy and slow, being very old, in technological terms. Son I am now researching comm devices for her and hoping to apply for a grant to help with costs. I agree that a total communication approach is the best way forward for us and many others. So, signing, PECS, electronic devices, speech if at all possible. Encourage everything really. My kid is 7 now and has all of a sudden decided to start using more speech! She can, with lots of encouragement, put 6/7 words together! I never thought this would happen, as she used to struggle with single words containing more that 1 syllable. Also, she has never been diagnosed with autism, but has chromosomal disorder with developmental delay. We live in Scotland and I think it is great to be able to share with all of you who are dealing with similar issues. Many thanks☺