By: Sara Holland, M.Sc.(A), R.SLP, SLP(C)
Upon arriving in Ecuador we found out the Centre would be taking the kids to a local amusement park on our first day and we were invited! MaFer, the clinic director, does this for the kids and their families every year. As MaFer was paying for the group to ride the ferris wheel, “La Perla”, she asked about the discount advertised for individuals with disabilities. She was told it didn’t apply to “that kind of disability”; it was only meant for those with visible physical disabilities. As we chatted more during the outing she told me how in Ecuador many families don’t access the community with their children on the spectrum, as there is still a stigma around Autism, which makes the parents uncomfortable, especially when managing challenging behaviour. Reflecting on our conversation later in the evening reminded me of a time when I first began working in this field and this was also the reality in North America. I felt disappointment knowing how much work lies ahead for the parents and professionals in this country.
During my stay I ran into this again with regards to one of the clinic’s goals for our trip – to have the non-verbal children begin using Augmentative and Alternative Communication (AAC). MaFer was excited to be able to explore an option to increase communication with those children who were non-verbal by learning about and implementing AAC options within her clinic. As we discussed the possibilities, she shared the parent and staff concerns she anticipated we would be faced with. All the myths I’ve spent years breaking down back home are very present here. As we discussed what we would try with one particular child, her therapist began to cry because she felt that by implementing the Picture Exchange Communication System (PECS), that we were giving up on speech and that she would never talk because of the pictures. She was very apprehensive and voiced her concerns several times over the days leading up to the training. In the first session of PECS with this adorable little girl, she began exchanging the picture independently, travelling to the binder, and clapping for herself when she got the item she asked for. The look on her therapist’s face was the thing that drives me to keep doing what I do and work to dispel the myths associated with AAC. There was less behaviour and more independence, in one session!
You may have heard the various myths, such as kids who use AAC will never talk or they must be able to do certain things before they can use AAC; these are just that – myths. There is evidence that AAC interventions pose no risk to speech development, there are no prerequisite skills for using AAC, you can never be too young or old to use AAC, it decreases challenging behaviour, and leads to increases in vocabulary, among many other things. Over the last 30 years there have been dramatic changes in the use of AAC, but that awareness and acceptance of AAC that we are so lucky to now have in North America, is not yet a reality globally. There is a lack of effective research-based services and limited professional capacity around the world, which we must continue to address. Communication is a basic human right – every person with a disability has the right to be able to communicate clearly, in a meaningful way, that is culturally and linguistically appropriate, and be responded to. I’m grateful for Centro Enigma staff being open to trying new things and the progress they made this week!