This article was originally published on the saiconnections blog page. You can read the original post here.
The above quotes are by people on the Autism Spectrum.
These days, the internet is filled with articles by Self advocates about their emergence from autism. They share how the world had given up on them. Yet they emerged from the depths to lead meaningful, quality lives. There are also some who don’t speak, who are nonverbal or non-vocal.
They use other forms of communication.
“Let’s pretend you are like me”, types Philip, a 12-year-old non-vocal child. “You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try. You can’t talk but you have a well functioning mind and can understand people.”
These words jump out at me. I have experienced this with my own students at SAI Connections.
Yes, some of them are non vocal. But this certainly does not mean that they don’t understand. They all communicate and show the desire to do so. But they don’t use words.
Over years, their parents have worked very hard with them to develop the following communication foundations:
1. Responding to people around
2. Awareness of their environment and understanding situations happening around them
3. Sharing emotions: They laugh, they joke, and hang out with their parents. And they don’t avert their gaze while doing so.
4. Using signs, gestures and facial expressions
5. The best part is that they are motivated to communicate
Speech is not equivalent to communication.
All my students have a common ASD diagnosis. And yet, each of them has a different style of learning.
Prasad, for example, is a sight reader. At the supermarket, he picks items once he sees them written. He can also type words.
Rishi reads and copies words and sentences. He is incredible with pictures and the iPad. In fact, he collects newspaper inserts of different restaurants and menus. When the family goes out, he pulls out the one with the cuisine that he’d like to eat!
Tanay is motivated to write and type. He uses gestures and signs and his facial expressions are very clear too. Shashank enjoys the iPad. He plays several games on it.
Why do I want to push further with these guys?
Because I know that there is a lot that they’d like to say. We see only the tip of the iceberg.
Can you imagine wanting to say something and not being able to say it? These children go through this every minute!
It’s high time to move one notch up with their communication.
They must have a voice.
Sometimes, we stare for so long at a door that is closed that we fail to see others that are open.
Here’s what I’m saying: If you’ve tried to develop speech for many years, and if it has not taken off, it’s time to look at other forms of Augmentative communication.
Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.
AAC devices are used frequently in the West. It’s high time for our kids to benefit from these as well.
For starters, here is how you can strengthen your child’s communication
1. Build up the relationship aspect so that you create communicative intent and motivation.
2. If you child has good vocal skills, stick with speech as the means to communicate.
3. If not, read on. The remainder of this post will help you figure out an alternative way to communicate.
Depending on your child and his specific set of skills, you have options. Sign language, PECS, Communication boards, Augmentative Communication devices, iPads/tablets, typing etc.
How would you decide which is the best fit for your child?
Take a pen and paper and make notes of the answers to the questions below. They will help you tremendously.
Does your child make sounds, say words? Do you have a ball park figure? Make a list of all sounds and words.
2. Gross and Fine motor abilities
Are the motor abilities at par with other children of the same age? You may need somebody’s help to assess this. Check out the list below. An occupational or physical therapist will be able to help with this.
3. Motor imitation
How good is your child with imitations? Make a list of actions that he can imitate.
This will prove handy if sign language is chosen as an alternative.
4. Visual skills
Is your child able to track moving objects? What does ‘attention-shifting’ look like? How well does he scan the environment?
5. Receptive identification of picture
Do you find your child looking at pictures to study them? Does he like looking at pictures in a book? Can he pick out a picture in an array of them?
This will explain if we can look at building communication through the Picture Exchange System or in working with a tablet.
6. Reading ability (sight or phonetic)
Does your child read? Does he sight read or does he read phonetically? Some children look at the whole word and read it. Others read by sounding the word out.
I work with a few students who possess an amazing ability to read. One of them was reading even before he said his first word. Having such an ability opens up several avenues.
7. Proficiency in using iPad or smart phones
The iPad or other tablets, if used well, can be a boon for our students. There are many games and applications that can be down loaded and are beneficial for them.
I was talking to a mother yesterday, who was all in praise of WhatsApp. She said that the back and forth messaging had really helped her teenager to move ahead with communication without feeling awkward.
8. Computer and Typing skills
Does your child display aptitude in typing? Can he type words or sentences? This is a great way for them to let us know what they want or to share their thoughts with us.
9. Writing ability
Does your child display good writing skills? If yes, it is an encouraging sign.
Many years ago I met a teenage girl who would write out messages. Mohit was having a tough time during his horse riding session. In fact, he had a meltdown. This girl sent me a note saying that I should seek out a good doctor as she felt that Mohit had medical issues. She was non vocal and on the Spectrum.
Take time to think about each of these areas. Make sure you note down your findings. Share these with your specialists. This will be a tremendous help for them to streamline your child’s program.
Over the years, I’ve realized that there is power in collaboration. We cannot function as individual islands.
Kamini Lakhani is a, RDI program consultant and the Director of SAI School (ABA Center) and SAI Connections (RDI Center). She has over 19 years of experience working with individuals with Autism Spectrum Disorders and currently serves as the director of our RDI Professional Training Center in Mumbai. She is the Director of SAI School (ABA Center) and SAI Connections (RDI Center)