I just had such an affirming experience. On my 8hr intl flight back from a conference, I sat next to a father/son. In broken English, the father began to apologize/warn me that his ~10 yr-old son had severe nonverbal autism, and that this would like be a difficult journey. 1/— Rachel R. Romeo (@RachelRRomeo) August 28, 2019
My problems are not with Rachel, but I do have problems.
Problem the first:
I tried to see if he was stimulable for a communication board. I started by pulling up some standard images for basic nouns on my computer but I could tell that screens really bothered him. So I summoned my god-awful drawing skills and tried to create a (very!) low-tech board. 4/— Rachel R. Romeo (@RachelRRomeo) August 28, 2019
Rachel doesn't think this kid's been exposed to much in the way of communication therapy. I don't know about therapy with a focus on speech, but given the father's confusion and how fast the kid responded to a low-tech communication board, I'm quite sure he hadn't been exposed to AAC before.
That's a problem. Yes, thank you for introducing communication supports. As an Autistic AAC user doing AAC work, I am appalled and horrified that people are reliant on a chance encounter with an SLP on a plane in order to be introduced to AAC. Communication access is a human right. I'm glad Rachel got seated next to this father/son pair, and I'm glad she introduced AAC. She did the right things in a situation that should never have happened. There should have been communication access years ago.
By the end of the flight, he had made several requests, initiated several times, & his behaviors had reduced quite a bit. The father was astounded – clearly no one had ever tried an AAC approach with him. I gave him the paper & showed him how to use it, and he nearly cried. 6/— Rachel R. Romeo (@RachelRRomeo) August 28, 2019
I'm happy for this family, that they have AAC now. I'm sad for this family, that this is what it took. A chance meeting with an SLP on a plane.
And you know what else concerns me?
People are sharing this like it's a heartwarming story. It's a terrifying story. Imagine how many doctors and therapists failed this family, that communication access rested on this chance encounter. Imagine how many people still don't have communication access.
This is, in fact, an important story. It's an illustration of just how dire the situation is for autistic people and our families trying to access the human right of communication. We are being "served" by people who don't know to consider communication board, who don't know to consider AAC. We are being "served" by people who see a non-speaking person who grabs things and assumes the way to go is to try to control the "behavior" rather than to provide other ways to communicate that they want those things. And we are being "served" by people who presume that non-speaking means non-thinking.
And no, I don't mean people who presume that non-speaking means intellectual disability. Non-speaking people with intellectual disabilities can use communication supports. I mean people who assume there are no thoughts worth trying to communicate, that the primary "service" needed is control over the person. It's a problem whether or not a non-speaking person actually has an intellectual disability.
So, share away. Just remember it's a story about years of communication denied and systemic problems. It's a story about a kid who didn't get to have his communication honored until he was about 10, who had his attempts at communication treated as "challenging behaviors" instead of attempts at communicating sans speech. It's a story about a chance encounter, and it's a story about everything that had to go wrong for that chance encounter to matter. This is no better than the high school robotics team making a prosthetic for a kid whose insurance denied it: good for the team, but remember why it was needed.
Share this story as an illustration of what's wrong in our system, not just as a story of one person who did a good thing.
As a retired special education teacher, I want to thank you for your response to this story. My first reaction to the airplane post was sadness and then anger when I realized how many professionals had failed this child and his family.I first used picture symbols with my preschool students in 1986. This was in the days of paper symbols, copy machines, and Apple 2es. It was, and continues to be a battle to convince teachers, paraprofessionals, speech and language specialists and others about the necessity of providing a communication system for nonverbal children and adults. The continuing comments about "non-compliant" behavior, intellectual disability,or "diagnosis" seem ongoing.
ReplyDeleteThank you for this.
ReplyDeleteI'm with you, Alyssa. I am puzzled as to why this child went nearly 10 years without anyone having apparently introduced an alternative form of communication to him. Was this a case of his local public school district falling down on the job, having never identified his needs and served them appropriately? It sure sounds like it, but how do the needs of such a child go unnoticed that many years?
ReplyDeleteRachel says the father spoke broken English, so it's possible the father and son were not from the United States, and I don't know as much about how special education works in other countries, or how easy it is for children who need supports in these areas to be identified or overlooked. I do know, as a school psychologist, that US public school districts are federally mandated to seek out these children, determine their needs, and provide them with a free and appropriate public education. I am puzzled as to why this one fell through the cracks, especially if his father knows him to be autistic. How is it that prior to Rachel, he never encountered anyone who suggested that alternative communication options enabling him to express his wants and needs without speech might make all the difference in not just his behavior, but his own quality of life?
This child's whole world must be blossoming now, and that's a great thing. But the fact that it took so long is truly sad, and puzzling.
This was exactly the gut reaction I had to that tweet, but couldn't articulate it. My son was 12 before I a) knew that there was a right aac method for him, and b) could find an SLP five states away who offered to help us get going. I mean, really. I knew it was out there, but we had no access, no support, and most school staff wrote him off. And we live in the "richest" state in the nation.
ReplyDeleteI completely agree with you.
ReplyDeleteSo many "heartwarming" stories are a lot less endearing when you examine what had to happen to create that situation in the first place.
ReplyDeleteAlso, this kid picked up AAC quickly. For some people, AAC is something that they need months of education to start getting it. Those people are often not given the chance to learn because people try AAC with them and assume that they can't do it at all because they can't do it immediately. (Imagine if Anne Sullivan had that attitude towards Helen Keller?)