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For Autism, Tech Must Be Part of a Bigger Picture

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Autism Awareness

Recent advances in autism research are paving the way for a new generation of apps and assistive technology tools that can have a real impact for kids on the spectrum.

It’s also led more than a few developers to try to cash in on the iPad’s-for-autism hype. Educators, parents, caregivers, and even investors need to remember that people, not iPads, are what really drive outcomes for autistic kids.

I’m currently helping bootstrap a new company looking at a range of interventions for autism and other conditions that make it hard for people to communicate effectively and build or maintain social connections. Alzheimer’s happens to fall into this category, as do brain trauma and stroke, among many others. I have two kids on the autism spectrum and have worked with many students struggling in mainstream settings because of social and communication deficits. And I make my living helping schools and businesses solve challenging problems with technology. Suffice to say, I believe pretty firmly in the power of technology to make a real difference in the lives of kids, parents, educators, and caregivers affected by autism.

Autism, though, is fundamentally about human connections and relationships (or the lack thereof). It’s about helping kids with autism function in a world where most people aren’t wired the way they are and where nuance and subtle cues can be critical to navigating everyday situations. It’s also about helping those without autism shift their mindsets to recognize that a growing number of students in their classrooms, employees in their companies, or kids in their families simply process information (especially social information) differently.

Making sure that every kid with an IEP and an autism diagnosis has an iPad with some well-known apps isn’t going to automatically improve outcomes or help teachers present information in ways that make sense to every learner. And parents desperate for ways to help their kids when educational systems fail them (which they unfortunately will) aren’t going to find solutions in an app store.

What they will find in those app stores, though, is a confusing array of tools. Some of these tools are very good. Some, like the new app recently announced by Cognoa that has demonstrated up to 90% accuracy in early diagnosis of autism, show incredible promise. Others are simply junk with no basis in research or clinical relevance. The bottom line, though, is that they are tools that need to be used in broader therapeutic, social, and real-world contexts if they are going to make a difference for kids on the spectrum.

I’m lucky to be working with a couple of outstanding clinicians as we build our startup who understand this distinction very well (I’m just a geek on a mission). Teresa Dooley-Smith, who leads TDS Speech Pathology near Amherst, Massachusetts, and co-founded our new venture put it this way:

“My issue has always been that we focus so much energy on creating the communication support (which is KEY to success), but we work less on using it in contexts. Frequently, parents and paraprofessionals are the ones left to use this app/device in the real world and that's VERY complicated and hard to do. It requires lots of encouragement and consistency. Speech-Language Pathologists (SLPs) have the expertise to devise the language, but putting it into a conversational give and take is challenging. Usually, there is a big "this is going to change everything" time and then reality sinks in. Slowly the device is used less and less. I see this now with iPads. So many people thought it was the answer and now parents are coming to me and asking why their child does not use the iPad for learning or speech?”

Neither Teri nor I are saying we should throw out the iPads, the apps, and the various assistive technologies that comprise the toolkits schools, parents, and students use to overcome the many challenges associated with autism spectrum disorders. We’re barking up the wrong tree with our own startup if we are. But everyone from clinicians to parents to investors needs to evaluate these tools as components of holistic approaches to autism interventions.

TechCrunch reported early this week on the $550k seed round that Avaz just announced to further develop and market their Avaz AAC app. The app itself is already a solid Augmentative Alternative Communication (the AAC in the app’s name) platform and I’m looking forward to seeing how the company can further extend the application with this round of funding. But as Ajit Narayanan, founder of Invention Labs (the group that developed Avaz), put it,

"Avaz AAC, addresses one specific dimension of the issue of managing autism – which is to teach a child with autism how to communicate, and help them build literacy...When used under the supervision of a speech therapist, Avaz can help a kid develop strong communication skills, and also gradually learn new words and grammar through the use of pictures.”

Interestingly, there are more than a few AAC detractors in the autism community - Not of the app, but of the approach itself, which has a steep learning curve and can be difficult to implement without the specialized expertise of SLPs. Unfortunately, schools and districts are looking to simultaneously cut costs and deal with a growing number of students on the autism spectrum (now 1 in 68 kids, according to the latest statistics from the CDC). Bringing the right mix of clinicians, counselors, social skills groups, and differentiated instruction to these students is dramatically more expensive than handing out iPads and assigning paraprofessionals to work with students using whatever apps the district can afford. But AAC doesn’t work that way, social skills development doesn’t work that way, and improving real-world outcomes for students on the spectrum most certainly doesn’t work that way.

The bottom line in all of this is that apps and other technology-based interventions are critical parts of a much larger picture. An AAC app that works brilliantly for one non-verbal autistic student may do nothing to address the social issues faced by a kid with Asperger’s. And without the right ecosystem of social supports, teacher professional development, parent involvement and education, assistive technologies, and speech/language expertise, too many kids are going to slip through the cracks, no matter where they lie on the spectrum.


Picture "48:365 World Autism Awareness Day" by Matt Beckwith

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