Hi. My name is Lisa. I have an 8 year old son with autism. He has also been diagnosed with a moderate intellectual disability, hydrocephalus and mild cerebral palsy. He is non-verbal and on developmental scales/tests functions no higher than a 2 year old, and that is in the area of gross motor. I was asked to write about his experience with use of a speech generating device and my experience as his mom in getting him what he needed. I’m writing as a mom. I am not a Speech Language Pathologist, but feel our experience can be helpful to others or at least encourage them to think about use of a speech generating device for their child.
I am passionate about my son’s communication. What parent of a non-verbal child wouldn’t be?! We’ve tried everything to help him, from a very early age. One problem with my son is he does not imitate, so sign language didn’t work. We tried PECS (picture exchange communication system), but he was never better than 50% accurate. We worked on that for years!! They tried some speech generating (communication devices) at school, but it felt as if we were always held up by his difficulty with picture discrimination and the thought that without that skill, he did not have the ability to learn to use the device. So what worked and lessons I’ve learned:
- First, it’s never too early to start using a device. Studies have shown that use of a device does not prevent the child from speaking. In fact, it encourages speech. I have found this to be true with my son. He has, on occasion, used words that we have been targeting on the device. Prior to the device, he did not. I wished we’d had better support and guidance earlier on to encourage use of a device. Do not let your desire for your child to speak prevent you from trying a speech generating device with him/her. Communication, in whatever form, is so powerful!
- A child does not need any prerequisite skills to learn how to use a device. They do not need to know how to discriminate pictures. That was the biggest hurdle for my son. I was told that he would not be successful using a device until he could discriminate pictures. I googled AAC (augmentative and alternative communication) and autism and discovered an approach that works for my son that focuses on memorizing motor patterns to locate the keys on the device he wants. Children with autism learn differently and need an approach that takes into consideration their unique challenges. Check out AAC and autism http://www.aacandautism.com . They use an approach called LAMP (Language Acquisition through Motor Planning). This has been the key for my son. Everyone that has ever worked with him is amazed at how much he is picking this up vs. anything else we have tried. Do not be lead to believe that your child does not have the cognitive ability to learn how to use a communication device. We still do not know if my son knows his colors, numbers or letters. He does not follow commands unless paired with a visual or tactile cue, but he is able to make simple requests using his device. I believe this is just the beginning for him. Our goal is for him to be fully conversive with the device.
- I recommend you have your child evaluated by a therapist who specializes in use of speech generating devices. We had to travel to a different state in order to find someone because it was important to me that they were well versed in ALL of the different devices available. Some facilities only use one brand/company. They may try to make a device they have in the closet work for your child because that is what they have vs. evaluating what would be the best and then securing that device for your child. It has required a lot of extra work on my part to secure the support we need to learn the use of the device he has, but it has been worth it! An added bonus…now the therapists in his local school district have learned the use of this device that no one else in the area, to my knowledge, knew anything about before my son got one.
- We were able to get his medical assistance to pay for the device. It was over $8000. If we had not been successful with that route, we would have tried to get the school to provide the device. We chose to pursue getting one on our own to have more control over which device. Luckily, his current team at school is fully on board with use of the device and they have even paid for training by a therapist who specializes in use of the LAMP method.
- There are a lot of apps on the iPad for communication, including LAMP, but I recommend you be supported by a therapist who knows how to use the apps. If you are interested in learning more about the LAMP method that we use, check their website http://www.aacandautism.com to find a therapist closest to you. We’ve had to work with a therapist that is hundreds of miles away from us, but it is working. As on aside, we have not had success with the iPad being used as a communication device because he uses it so much to watch videos. We also have a lot of educational games on it that he tries to play.