“He is too smart for an AAC device.”
Those words continue to echo in my mind, bouncing around the cavernous spaces where I perseverate on every interaction I’ve ever had since the dawn of my memory. I keep hearing those words meant to deny my child the right to communication because of some ableist notion of what a communication disability should look like.
My child is not autistic (note the language here is preferred by the community I’m referring to). My child doesn’t have an intellectual disability. My child’s receptive language is in the 91st percentile, so he understands more than most other kids his age.
Pretty stunning for a child who was initially found to have almost no receptive language (strangely, his expressive language score was found to be higher than his receptive, which, when put in the context of language development, makes very little sense and should have told them right there and then the results weren’t accurate, but that’s a tale for another day).
No, my child has apraxia and a phonological speech sound disorder (he also previously had a speech delay). Combined with ADHD, fine motor delays, and significant sensory processing differences.
He is not as much a unicorn or even a zebra as a rare breed horse…which is to say, he isn’t neurotypical, but he certainly isn’t a one-in-a-million case, either. His neurotype profile is pretty run-of-the-mill. These conditions frequently co-occur, and all his traits within each category are pretty standard.
AAC, which stands for alternative and augmentative communication, is not a single thing. It is a large cluster of varying tools and strategies that allow users to find ways to communicate when spoken words fail them. These tools are given to users for any number of reasons; acquired language disorders such as aphasia, language absence due to intellectual impairment, and, yes, people with a variety of kinds of apraxia affecting speech (including childhood apraxia of speech, which is my son’s official diagnosis).
My child speaks and speaks a lot. The problem isn’t the absence of speech; it is something in his brain that doesn’t allow him to engage in the motor planning necessary to formulate intelligible speech, as well as something that prevents him from fully understanding the speech sounds (phonemes, as in that pesky phonological speech sound disorder).
All that is to say, my child has a lot to say, but it is hard for anyone to parse out exactly what that is.
If you had something important to say, would you want people to listen and understand? What if they couldn’t? Would you want them to make an effort to determine what you wanted? Or would you want them to tell you to figure out how to actually say to them verbally and walk away?
I know your answer without ever having met you.
But this is exactly the message my child’s school district gave when we requested he be given access to a device to help him communicate. Because he didn’t have an intellectual disability, he should be able to ‘figure it out.’ They’d “never seen a cognitively intact child use an AAC device.”
Maybe not, but I bet they know who Stephen Hawking was. Yes, his system was AAC. He was brilliant, but his body and brain failed him. The only difference was that a disease robbed him of his verbal ability. My son was just born to communicate differently.
It is high time professionals, parents, and the wider community put aside our ableist notions of what fluent communication should look like and focus more on allowing people to use the tools that help them communicate most effectively.
My child did eventually wind up getting approved for an AAC evaluation. Not surprisingly, the evaluator found my son to be “the poster child for hybrid communication” (i.e., using both verbal speech and a device) and is recommending to his committee that they approve one. We have to wait until the meeting to see if my child’s right to communicate will be upheld or if we will be in for another reductionist argument about how those without cognitive impairments shouldn’t need a device.
Even if approved, we don’t know how long he will need the device. Some kids with apraxia go on to be fully intelligible. Others will always have some difficulty with creating motor plans for spoken language.
Whatever the outcome, I hope we will be past this nonsense by the time he is an adult. I hope when my children are grown, we will embrace that we all have unique ways of communicating, which should be embraced and cherished rather than admonished. The beautiful thing is you can help bring about this change.
The next time you see someone repeating a phrase or sound over and over, smile, knowing they are finding a way to process information. The next time you see a deaf person attempting to communicate in sign, don’t ask if they lip-read to avoid having to accommodate. The next time you see someone with an iPad around their neck with a communication board, don’t assume they have an intellectual disability (although they could, and there is nothing wrong with that either), or pity them.
Be encouraged that they had people who loved them enough to fight for their right to be understood or that they themselves found the strength to buck the stereotypes and have their voice heard.
And let’s take it beyond language. The person flapping, spinning, or bouncing off the walls is trying to regulate. The person who won’t look you in the eye may be anxious or simply able to interact more effectively without the added stimulation. The person in the handicapped spot who looks ‘fine’ and doesn’t use a wheelchair may have a heart condition, arthritis, muscular dystrophy, a neurological condition, or any number of other things going on that you can’t see with your eyes.
The person cutting the line in the bathroom isn’t a jerk; they have Crohn’s or Ulcerative Colitis or an ostomy that might be close to leaking. The person refusing to eat at a party isn’t being rude or picky; they have a food allergy, intolerance, or gastro disorder that prevents them from eating solid foods (maybe ever, maybe only at that moment).
