Autistic father develops language tool for ‘the unreachable and unteachable’

Enda Dodd was always so busy focusing on family and career that he never really had time to think about how he got there.

There is, and was, a successful career with a healthcare multinational, as well as being a parent, with his wife Val, of twins Conor and Eoin (26). When the boys were six years old, they were diagnosed with autism. Conor was the more severely affected, being unable to communicate due to deafness, cognitive deficits, profound language disorder and global dyspraxia.

Shortly after that diagnosis, the Dodds were told that their sons would never learn to communicate and that one day they would have to “drop them to an institution and drive away”.

Pretend play

As The Irish Times reported in 2017, the family moved from Galway to the US to seek better resources for the twins. Enda Dodd was fortunate in that Medtronic in Galway facilitated his transfer.

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The boys couldn’t communicate but would pretend to be Woody and Buzz Lightyear from Pixar’s Toy Story. “Bartering toys and running around pretending to be superheroes, they were engaging in pretend play, showing an intelligence way beyond their language. Of this, Val simply stated, ‘I know they’re intelligent’!” says Enda.

Their father followed the boys’ lead and started building stories from Disney media in a sitting room full of computer screens, mirroring how the boys thought. Once under way, the process of growing the boys’ language became intuitive, he says.

Living in California, the couple drew on contacts to build a research team involving companies such as Disney/Pixar, Adobe and the University of California.

One day the clinical team sat Enda down and told him that “everything” about him points to being autistic too. And that the way he can transition from communicating with the team to his non-verbal son means that if they are to understand the boys, they need to start with him.

Over time, Enda worked with the team along with his sons, unravelling a blend of his deficits, differences and accommodations which were later pivotal in defining the twins’ future. And so, when he was let go by Medtronic in the US, he cashed in his stock options and established a company known as Animated Language Learning (ALL).

The family moved back to Ireland, secured support from the University of Galway to set up a campus company, and enlisted 300 families — 120 of them Irish-based — to work together to develop an autism speech and language programme. “The intention was to achieve the same results as we saw in our own twins using the same principles. With the help of the Silicon Valley corporates, we created a teaching tool with sophisticated data collection,” he explains.

The home-based pilot study (involving 277 children aged three to 15 years) showed non-verbal children progressively completing up to 60-word exercises per day in what he describes as “an effortless and game-like experience”.

“As with the twins, the unreachable and unteachable were communicating,” he says. “We could see we had a strong basis to continue. We also saw the autism label had little meaning. Children who were on the study presented with a range of definable strengths and deficits from sensory, auditory, language and praxis [ability to control limbs] all mixed up.

“As sophisticated as the software was, Val and I were overwhelmed with all the data created for each child. We needed to add machine learning and artificial intelligence to access and guide the language programme and make sure the child’s learning experience matched their needs. It involved being able to quickly map a child’s development, and instantly make decisions on how to help, and do something that has never been done before — an artificial intelligence system that thinks like us and will demystify the world for us.”

Last year, ALL teamed up with digital innovation start-up Joulica Ltd and University of Galway to advance the technology — working on a complex artificial intelligence capability and child-friendly interface to create “a truly precise, individualised and progressive language learning experience”, says Enda. The plan is to work with the global team, including clinicians and technologists, managed centrally by ALL at the University of Galway.

‘Going international’

The company prepared a disruptive technologies research grant application of almost €5 million to Enterprise Ireland, hoping it would be key in funding an initiative that could benefit some 45,000 children on waiting lists for services in Ireland before “going international”.

The application was submitted in April, 2022, and involved two reviews — a written assessment and a Zoom interview. The project was rejected as not being “industrial research”, a requirement for the grant.

“Fielding complex verbal questions without context in minutes is extremely difficult for me to do visually and it showed,” says Enda.

He appealed the decision based on his own autism. On review, Enterprise Ireland agreed to reopen the assessment, facilitated by a senior counsel (barrister) with direct experience in human rights and equality procedures. Of course, this does not necessarily mean the application will qualify.

“Regardless of the outcome and much like the emergence of the deaf community in the 1960s, I see now as our time,” says Enda. ”For autistic people to take their place in society, it is starting with the one thing that a child who is different needs to reach their potential - a belief in themselves. And what a wonderful thing this will be for the world!”