The assumption that a child or adult with autism, Down syndrome or another diagnosis may not be capable of communication. This leads to them not having access to a robust AAC system and opportunities to learn. The ultimate outcome of this assumption can have a devastating impact on their future. It doesn’t have to be this way.
Presuming competence is a mantra that is heard a lot in AAC circles. Here’s the idea: there are no prerequisite skills required before you can provide someone access to a robust AAC system and start modeling its use. If we believe this, we make the least dangerous assumption.
This isn’t news. Professor Anne Donnellan introduced the concept in 1984. The concept suggests when data is lacking, educational interventions with students with disabilities should be based on assumptions, which, if incorrect, will provide the least danger for independent functioning. This implies that it is best to provide someone a robust AAC system, model and teach its use, regardless of whether they will ultimately use the system to its full potential. This is surely better than providing no or a limited “simple” system that could potentially hold them back in their language and communication development.
Communication as a basic right
This year, Jordyn Zimmerman wrote a blog post for us. She described her lived experience of teachers who did not presume competence. Here is a short excerpt of that post.
“At 17 years old … I participated in basic activities such as putting teacher's name cards in alphabetical order, washing windows at the bus garage and going to Old Navy to hang clothes on hangers. I think it was the severity of my behaviors that led teachers to treat me like I couldn’t understand anything more than basic English. People looked at data and made assumptions that were wrong."
“Just shy of my 19th birthday, I began communicating through an iPad … I needed a way to share what was bothering me in school -why I was so resistant to their instruction. Administrators were under the impression that I despised school and that it was too demanding, but really I craved higher level teaching; I wanted to be taught curriculum that challenged my thinking.”
Jordyn was held back by an educational environment that did not presume competence. It did not offer her a robust communication system and the challenge that she needed. By ignoring the least dangerous assumption her independent functioning was put at risk.
Sadly, in practice, Jordyn’s experience does not appear to be an exception. Many students with severe communication challenges must first prove they are capable of communication with a limited system before access to a more robust system is provided.
They must show they have good receptive language, communicative intent and meet other prerequisites before being taken seriously and provided access to robust AAC. But, how can you show what you understand if no-one has provided you with the means to communicate your thoughts and understanding? It is a catch-22. We can only escape if we presume competence - the least dangerous assumption.
Imagine for a moment that this is your first communication system:
- Are you going to be able to show your language skills?
- Your desire to have meaningful communication with other people?
- Will you, with only access to these words, be able to convince the people around you that you are ready for a robust system?
- How many hours or days will you keep trying to show your skills and abilities with a system like this before giving up?
- Does the system allow you to express anything you really want to say?
Achieving beyond expectations
To prepare for a presentation earlier this year I asked the members of our family members of AAC users Facebook group a question. Were their children underestimated because they had no good means to communicate? I received an overwhelming number of responses from parents who's children achieved far beyond the expectation of others. Here are some of the most salient ones:
- Pam: “I was devastated when they told me that Josh was cognitively not capable of using a dynamic display device. We took out a loan, bought the DynaMyte, I learned how to use it and taught Josh. Within a year, he was beta testing Nancy Inman's Picture Word Power. The rest, as they say, is history.”
- Karla: “Elina was assessed to be very low functioning. Can you believe she is in the second year of college already? Honors program even!”
- Anne: “We were told during kindergarten that my son did not have the capacity to have a device with more than 4 simple buttons. We disagreed and got him Proloquo2Go. He quickly mastered it. School since was able to determine he is reading at grade level.”
- Sandy: “My 5 year old started special school this year after IQ testing 55. We got Proloquo2Go for him ourselves as therapists said he hadn't mastered PECS well enough to start Proloquo2Go. He took to it immediately!”
- Serena: “She is 11, mostly non-verbal, and her last development evaluation put her at 18-24 months. She finds and watches TED talks and listens to podcasts on social services…”
- Joyce: “My son had a parent-provided Dynavox in kindergarten. They were not using it. They thought him MR and incapable of using it. We sued the district. Three years later we purchased Proloquo2Go. He is now 14, on grade level for all subjects but written expression.”
- Emma: “My son is 4. He is profoundly deaf but has been hearing with cochlear implants since he was 2. He also has an Autism diagnosis and global developmental delay. We were told last December by his speech and language team that he wasn't ready for an AAC device. Thankfully I spent lots of time researching AAC use in preschoolers and went rogue against the 'professional' advice! He has far exceeded my expectations over the past 5 months.”
Paying the price
Josh’s story began almost 30 years ago. Jordyn’s story began 20 years ago. But it is clear from the experiences above that their stories are not unique and young kids today run similar risks.
It is important to note those examples were shared by parents who challenged educators and therapists. This isn’t always the case. Many parents will not be in a position to challenge the professionals working with their child because they do not have the knowledge, stamina or financial means. Irrespective of whether professionals or family members are the ones not presuming competence the individual with the communication impairment pays the price.
Presuming competence and AAC Awareness Month
October is international AAC Awareness month. This year we will be focusing on presuming competence. We chose this theme because, from our perspective, any AAC journey should start with presuming competence. That presumption is really the only prerequisite for starting the AAC journey.
We will be sharing a number of blog posts on this topic. You can look forward to a great post by Erin Sheldon on what presuming competence implied for her daughter Maggie. In another post, our own Jennifer Marden will explain how presuming competence affects vocabulary design. We’ll also be sharing lots of content on Facebook and Twitter and encourage you to share your own experiences!