Is he verbal? Is he non-verbal? Brandon can talk, but he is not able to carry on a conversation. His vocabulary consists of words he wants to say and things he wants to talk about. His sentence structure is poor. His pronunciation with some words is not good. If you didn’t know him, there are times you may not understand what he is saying. There are times he tries to tell us something and we spend a lot of time figuring out what it is.
Trying to figure it out
Brandon likes to listen to music in the car. A few years ago, we would get in the car and Brandon would say “window, window, window”. We would roll the windows down and he would say “no thank you” and then repeat “window”. It took us a few days to figure this one out. Steve finally got it. Brandon was telling us he wanted to hear the song “Cruise” by Florida Georgia Line. One line of the song is “you make me want to roll the window down….”. We played the song and Brandon was so excited that we finally figured it out!
Delays in speech are not uncommon in those with autism. There are studies out there that report approximately 30% with autism never learn to speak more than a few words. And then there are those with autism who are able to speak really, really well. And I could not find anything that says why this is. There are ongoing studies using mappings of the brain and all that kind of stuff, but nothing conclusive at this point. I worked with individuals with developmental disabilities for 22 years. I have worked with folks who didn’t speak at all and with folks who would talk my ear off. Autism, in part, is characterized by difficulty in social interactions and communication. Early intervention is very important in developing communication skills.
Where we started
Brandon did not start talking until he was 8 years old. Prior to that, he would make his noises, but there were no words. He had speech therapy from the time he was diagnosed with autism at 18 months, but he still could not form words. When he began attending a self contained school in third grade, the amount of speech therapy was increased and that is when we began seeing a lot of progress. They used PECS cards and communication devices to help him. Music therapy was used to help enhance his speech. OT was used to help him figure out how to use his mouth to make words.
I honestly don’t remember the first words he said. It probably had something to do with cheese since that is his most favorite food in the whole entire world. I do remember being so excited that he was learning how to use his words. We were excited about the prospect of him being able to communicate his wants and needs. We were certain his language would improve and we would be able to have conversations with him. We were ready for him to be able to communicate verbally.
Where we are now
His communication skills have improved, but he is never going to be a conversationalist. Unless you enjoy talking about animals with him. Even then, his verbal skills are limited and he really only wants to talk about the animals that he wants to talk about. Introducing a new animal is difficult, but we do it occasionally just to spice things up a bit.
My nephew was visiting the other day and was witness to one of our animal conversations. Brandon wanted to talk about cheetahs. We always talk about cheetahs so I said I wanted to talk about a rhinoceros. Brandon, of course, said no, thank you. I persisted and asked if he could spell the word. He went back to the cheetahs and then he proceeded to spell the word rhinoceros. And he spelled it correctly. My nephew was duly impressed! And then we were back to cheetahs.
Brandon uses language repetitively. He will say the same things over and over and over. Recently, this has centered around the game Mario Kart. We have heard “play Mario Kart” at least 2 million times since this past November. Some good news related to that…yesterday he only said Mario Kart about 30 times. Woo Hoo!!! Improvement!!!
Brandon uses a lot of scripted conversations. For example, when Kelly, his support worker, arrives, she asks Brandon how he is doing. He always says “I’m fine”. We are working on getting him to say “I’m fine, how are you?” This has taken a lot of time, but he now does this about 50% of the time without prompting.
After every activity, Brandon will tell us that he had a nice time (we have to start with asking him if he had a nice time). Kelly is helping him with asking if she had a nice time, also, after they go somewhere. Scripting. Kelly just told me that she has also helped Brandon with saying “hi” to the people at the local quick shop. She has worked with him on calling them by name and saying “Hi, Sue”. Scripting. This has helped Brandon feel more connected to his community and for them to feel more connected to him.
One of our greatest fears has always been that Brandon would never be able to tell us if he is sick. When he was 13-14, he came to me and said “ear hurt” and pointed to his ear. I thought maybe I had heard wrong and asked him to say it again. He kept saying “ear hurt” and then added “doctor”. OH MY GOSH!! We jumped in the car and headed to the urgent care. I am almost embarrassed to say this, but I was so excited when the doctor looked in his ear (and Brandon let him!) and said he had an ear infection. I clapped and hugged Brandon and was smiling from ear to ear. The poor doctor looked at me like I was nuts and then I explained how this was the first time Brandon had ever told me something hurts. Then the doctor and I high fived and praised Brandon. From that time on, Brandon will tell us if he isn’t feeling well. Progress!!
We tell Brandon we love him all the time. He will say it back to us, but never says it first. Except for that one time a couple of years ago. He looked at me and said “I love you, Mom”. I just stared at him and then I cried. It was beautiful and I treasure that memory. He has not said it first since then, but that is okay. I know he does because he told me.