Sunday, October 19, 2008

Thoughts on High Tech Augmentative Communication Devices

High tech speech generating machines (basically specialized computers) are getting better and better and they have become an option that a parent can seriously consider for a nonverbal or minimally verbal child with autism. Many children with autism have successfully learned to use these devices and become far more able communicators. This is the good news.

The bad news is that acquiring a machine, configuring the talking buttons on that machine for an individual child, and teaching a child to use the machine is challenging and unbelievably time consuming.

I am feeling this personally, right now, because I have a new machine that came home with me for the weekend. There is sits, on my table, like a brick. I don't want to read the manual--which I have to do every time I embark on this journey because the technology changes and varies between machines. I don't want to program it because I have trouble with far easier tasks like getting my new alarm clock programmed (What is up with this stuff about hold down button A and C for five seconds to change the year, month and date? Who cares about the year, month and date on an alarm clock?) But today, as I look at this cute little red box of buttons, I feel oppressed. I don't want to do the hours and hours of work that this little talking machine requires because there is no time in my regular work schedule to do it. The only reason that I will do it is because I know a child who needs it and I have a parent standing by who is a committed partner in this project.

Parents often lament, as one mother does in the comment section of my last post, that school professionals are not very helpful in the process of getting the augmentative communication machines that a child needs. Not having access to this kind of machine if one is nonverbal and can learn to use it, at least by kindergarten age, is unconscionable. It is like not being provided with glasses even though you can't see well enough to read, a hearing aid even though you can't hear the teacher talk, or a wheel chair even though you can't move around independently. Not being able to talk is an insurmountable barrier to an education and if a machine will provide a child with more access to an education, the school folks should be the strongest of champions on that child's behalf.

Here's the rub. It requires more resources to set a child up with one of these devices than many schools have. This is not right or even legal but it is literally true. Not just money resources either. A newly graduated special education teacher may be scrambling to manage problem behaviors and have not yet even wrapped his mind around what autism is until most the year has past. An experienced SLP may have had several unsuccessful attempts at using augmentative communication systems and feel sure that she will get no support from the classroom teacher, administration or even the child's parents if she tries this again because one of those factors sank the project the last time she tried. An older teacher (my age) may be painfully aware of how hard new technology is for her to learn. These difficulties may be overcome if school folks and parents create a true partnership but everyone must acknowledge the reality of the problems they face and find a solution that can actually work. Good partnerships are hard to create--for everyone involved, but that is another blog post.

In order to successfully get a child communicating on one of these devices, it is my belief that the home part needs to be the strongest part of the partnership. School professionals will come and go but parents are there for the long haul. Parents should not depend on the school for any part of managing an augmentative device but rather independently become experts on the machine. In my, admittedly limited experience, the only children with autism who seem to be doing really well with these machines are children with at least one totally committed adult. Sometimes a family is lucky enough to have that in a school professional and lucky enough to have that person there for a child year after year. More often, though, the success stories feature a committed and well-educated parent. If I were a parent, I would assume that this is what needs to happen. Indeed, I ask the parents that I work with to make that committment.

In the next post, I will talk about how we at the Scottish Rite Clinic are managing the process of getting children with ASD on these high tech devices--not because our system is the best but because it will give the interested reader a sense of the scope of the process, at least in so far as we understand it.

All things considered, these amazing little machines are Good News. Now I better get working on the red box that awaits me.

Note: The machine in the photo (on my dining room table) is a Prentke Romach Spring Board Lite.

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