We deserve access to AAC!

Let’s talk about the impact of pushing speech only on children with speech problems. I was in speech therapy until I was eleven. I don’t remember everything about it, but I think I was mostly there because I said a subset of consonants differently than typical kids. I am not actually clear on whether people around me were really having a hard time understanding me, but looking back my impression is that my speech was not unintelligible, it was just different. So I have to wonder, were the years spent training me to talk “better” worth it?

Because, here’s the thing. The message I came away with, all those years later, was that the way I naturally did things was bad and wrong. Given, this message was coming across in more areas of my autistic life than just speech, but speech was certainly one reason I felt like who I was wasn’t okay. That has had a lasting impact on my self esteem and mental health. I was being given rewards for pronouncing things right, and drills and homework when I did it wrong. Meanwhile, I am not sure it ever occurred to anybody to actually ask me if I wanted to learn to pronounce things differently, or whether I was comfortable with the way I sounded. I know I did not enjoy my speech homework: reading aloud at night. Mind you, reading and books and words and letters were my special interest, but I did not see the point of reading out loud if I could enjoy my book twice as fast by reading silently. I do not remember expressing any of this, I needed love and approval too much to risk voicing my internal dissent as often as I felt it.

It also did not seem to occur to anybody that speech might be even more difficult for me than was represented in my actual output, and that it was just getting more and more exhausting the more I tried to say things the way they wanted me to. It’s only now, as an adult, that having access to AAC is showing me how different my early life could have been if that struggle had been better recognized. With AAC it’s like a giant weight I hadn’t fully realized was there has been lifted. For example, in sign language I find myself outgoing and energized by social interaction, the complete opposite of my other experiences socializing. Using dedicated high tech AAC on a day to day basis tangibly improves my life as I can express myself more fully with less difficulty and I have more energy to spend on other tasks. So why didn’t anyone try me out on these options when I was in speech therapy?

Not being diagnosed autistic at the time perhaps has something to do with this, but I believe it shouldn’t. I think everyone in speech therapy for any reason should be considered candidates for AAC – not in the sense that the therapist thinks about it for a few seconds and then checks a box saying it’s been considered but isn’t necessary, but in the sense that it is presented to the communicator early on as an option they’re welcome to explore if they think it would be helpful. Please note that I said “presented to the communicator”, not “presented to the family”. Caregivers don’t have the right to make decisions on behalf of disabled people about how we communicate; every human being has a right to determine that for themselves. It’s caregivers’ and professionals’ job to provide as many options as possible. This statement is not dependent upon perceivable verbal ability. People with any kind of struggle with speech, language, or communication – no matter how adequate or promising you think their speech seems to be – might possibly find AAC easier, more effective, or otherwise preferable for expressing themselves fully and without undue hardship.

Presenting atypical communicators with these options and determining whether they want to work on speech, pursue AAC, or both is going to look different for different people. For an apparently verbal autistic kid like me with pronunciation problems but demonstrated ability to understand and respond to questions about preferences, professionals could initiate a verbal conversation about the topic accompanied by demonstrations of some AAC methods and directly ask what the person wants to focus on. For nonverbal kids who haven’t yet been given supports necessary to demonstrate their ability to understand questions and communicate their preferences, this can be approached differently. Pair speech with sign language and/or picture boards early and consistently, and wait to see which method of communication the child attempts to learn. If the AAC methods have been presented as equally favorable as speech – if no one is coercing the child into focusing on one of the methods over the other – the choice of communication method(s) the child begins to use is in and of itself an expression of their needs and preferences. In either of these scenarios, if a communicator chooses to use AAC, professionals’ and caregivers’ job is to make sure we get quality tools for the method(s) we show interest in (symbol books, letterboards, devices, etc), to model consistently and intensively so we can learn to use those tools comprehensively, and to actively validate our communication methods as equally valuable as speech.

Making sure we have the chance to try AAC if we want can have such a positive impact on autistic people. For one thing, it’s a chance to give us agency over our lives, something too often stolen from disabled people. It sends the message that there is no one right way to communicate, that any method or pronunciation or word order is effective communication if it’s getting the intended meaning across. This could do a lot for the self esteem of those of us who communicate atypically. And finally, for those of us who do end up finding AAC more comfortable than speech, it’s opening a door to a priceless tool that can improve our quality of life drastically. Please never assume, based on what you see from the outside, that we don’t need what’s behind that door. Give us the chance to decide that for ourselves.

 

Credit to my dear friend Saoirse for being a second set of eyes on this post.

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